We All Believe in Love

Kathe and David SkinnerWe  believe in love, we just don’t practice it.

Maybe because we think love has no limits, no boundaries, that all is fair.  Love conquers all and love never ends.  Besides time, love is the greatest healer.  And along with diamonds, love is forever.

If that’s true, what about the chart-topping occurrence of divorce?  It’s said that love never fails, but it does.  As for remarriage, those vows would have to be toned down to reflect this second-hand (or third or more) love.   But they’re not.

Love is conditional.   We love for different reasons, with the reasons shifting and shaping over time together and time separately.  In the beginning, each of us has a different definition, based mostly on expectations.  Usually kicking and screaming, the realization hits that being “in love” suggests a togetherness, a “we-ness”; it’s that definition that relationship is about.  It’s a definition that must be known, spoken aloud, and agreed to by both parties and must be flexible enough to join us wherever we are in life.  Most of the couples I see in my office are still clinging to a separate love definition.

In a purely selfish way, my attention comes to focus on invisible disability.  And how that sometimes becomes a deal breaker when it comes to the limits of love.  Besides losing partner-love (or maybe because of it), self-love takes a big hit when the cause of break-up may be disability or chronic illness. Don’t kid yourself (but you will) into believing that your definition of love is your partner’s definition. Remember that the definition of love morphs over time; love is defined by each partner because of all the elements that go into who we are at that moment.

I always disclose to my clients the fact of my MS; one time a client told me he couldn’t work with me because I was “broken”.  Taken aback, I recovered enough to ask him to reconsider, to think about it until our next session.  I’d never had a client be so direct and I’ll admit I was hurt to be judged for my disease.  We did work together very successfully and, at his final session, he told me that he had come to realize that because of his severe anxiety, he was “broken”, too.  I’ve never forgotten how moved I was that my invisible disability led to his introspection and greater understanding of himself.  Best of all, he not only didn’t judge me, but he didn’t judge himself.

It’s crucial at the most basic, core level to actively and with intent search out love’s meaning.  Taking for granted that your definitions are the same leads only to stalemate; bullying for agreement leads to worse.  This love is about the “us-ness”  each of you gives over; anticipating that it will not always be as you first described love in those first dewy moments, faces the reality of who we become together.  Or if we do at all.

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Friendships Over Fragrances

Is-a-loved-missing-from-your-life

A couple of years ago, my wife, Sherri, said to me, “We need to go to San Diego for surgery.” Really? San Diego? Walks on the beach! Shamu! The zoo! It sounded like fun. OK, the surgery part didn’t – but we had not had a vacation in almost three years, and I could think of worse places to go in February. Maybe we could even make a stop and see Mickey Mouse.

Then, I remembered that we could not fly to San Diego. We would have to drive from Denver, two days out and two days back. Why would we have to drive? In addition to living daily with Multiple Sclerosis (MS) and Lyme disease, Sherri also suffers from a medical condition known as Multiple Chemical Sensitivity (MCS). Airplanes and rental cars are out of the question. Our car is an older model car and is a safe place for us.

Finding a place to stay is also not an easy task. We needed to stop for one night on the way to California and one night on the way back. It usually takes about a month for me to prepare for a trip like this. Before we leave, I fill up the car and cargo carrier with all the necessities, including gas filtering air purifiers, UV mold killers, oxygen bottles, coolers for food, sheets, towels, pillows, sleeping bags and couch cushions (in case we have to sleep in the car). We call hotels in advance to have them clean the room with baking soda and vinegar. We almost did have to sleep in the car on the way back, because the hotel said they gave away our special room. Fortunately for us, they didn’t, although the room was barely tolerable with only two air purifiers on full tilt.

We wanted to spend three nights at Disneyland and three days in San Diego. Disney was amazing. They blocked off our room in advance and did their special allergy cleaning and even provided their own air purifier for the room. Disney also turned off the fragrance generator in the hotel lobby and permanently removed the air fresheners in each of the first aid station restrooms in their parks, not only at Disneyland, but at Walt Disney World as well. They did all of this because of their world class service and because of the educational material we provided them from the Cleaner Indoor Air Campaign.

Finally, we stayed in San Diego for the surgery and recovered at the home of our great friends, Karyn Buxman and Greg Godek. Karyn is a nurse, Hall of Fame speaker and the author of the “What’s So Funny About … ” series of health humor books. Greg is the best-selling author of 1,001 Ways to be Romantic. (You can read posts from Karyn and Greg on Disability.Blog.)

In order for us to stay at their home, Karyn and Greg had to change their laundry detergent to fragrance free a few months before our visit. A week before we arrived, they started to use fragrance-free soap, shampoo, hairspray and deodorant. They also sealed in bags and hid away any candles with fragrances. We felt very honored that they would not only host us in their home, but also think so much of us as friends that they would change some of their personal lifestyle habits and choices.

The trip turned out to be amazing, because Disney, as well as Karyn and Greg, chose Friendships over Fragrance. Most people have experienced or know someone who has difficulty breathing, nausea or headaches from things such as cigarette smoke, diesel exhaust, pesticides, cleaning agents or hanging out in the laundry detergent aisle for too long. Even so, when it comes to those who report moderate to severe adverse health effects from chemicals used in everyday items, such as perfumes, fragranced laundry and personal care products, friends and family are often perplexed.

However, millions report living with various Environmental Illnesses (EI), such as Multiple Chemical Sensitivities (MCS), Toxic Injury, Chemical Injury and/or Toxic Encephalopathy. In addition to the many people who have reported worsening of allergies, asthma and COPD, others particularly at risk include those battling illness or cancer, or living with Autism or Post-Traumatic Stress Disorder (PTSD), as well as expectant mothers and babies.

Some of the symptoms reported range from mild to debilitating coughing, difficulty breathing, closing of the airways, sneezing, nausea, headaches, dizziness, weakness, numbness, fatigue, flu-like symptoms, pain, joint swelling, migraines, vertigo, fainting, behavioral and mood changes, depression, hormone dysfunctions, memory loss, cognitive dysfunctions, paralysis, seizures, swelling of the brain and more.

Surprisingly, issues with fragrances are not as rare and unusual as people may think. Research done in 2004, 2005 and 2009 by Stanley M. Caress and Anne C. Steinemann found that nearly 38 percent of Americans report adverse effects when exposed to a fragranced product. For instance, approximately 20 percent of Americans report breathing difficulties, headaches or other health problems when exposed to air fresheners and deodorizers, and more than 10 percent report adverse effects when exposed to laundry products vented outdoors. Percentages are nearly twice as high for people with asthma. With approximately 310 million people in America in 2010, that is almost 117 million Americans who have adverse effects to normal, everyday products.

It is suspected that many more may possibly live with these reactions, but do not make the connection between the fragrances and their symptoms. Therefore, it is hard to determine exactly how many more people are affected. In a 2010 study of 25 fragranced consumer products, researchers identified 133 different VOCs (volatile organic compounds). Of those 133 VOCs, 24 are classified as toxic or hazardous under at least one law.

Just taking laundry products alone as an example, the University of Washington found that all but one of the chemicals found in these products are “regulated as a toxic/hazardous chemical” under 1-7 laws. They are also listed either as a recognized or suspected carcinogen, as well as a neuro, immuno, kidney, liver, blood, developmental, respiratory, gastrointestinal, reproductive, endocrine, skin and/or sense organ toxicant. Therefore, we cannot be entirely sure what kind of havoc these chemicals and others in our environment are doing to our bodies, health, blood, organs, hormones, immune or nervous systems.

When making modifications for people living with EI, keep in mind that everyone is different. Some reactions are more severe than others; some limitations from work, stores, public places and events are more constricting than others; and some can tolerate a certain product, but not another. For example, Charlie may notice he gets moderate headaches and nausea for several hours when he is around cigarette smoke, diesel fumes or heavy perfumes, while Sara may report debilitating migraines, pain and fatigue for several days or more from the above, as well as fragranced items, such as laundry, soaps, shampoo and deodorants.

As we can imagine, people living with these conditions can experience minor to extreme limited access to public places, issues at work or inability to attend functions with friends and family. Regrettably, these barriers may lead to feelings of loneliness, isolation and abandonment when loved ones choose not to forgo the fragrance products that cause these problems. Therefore, if our loved ones are telling us they are getting debilitating migraines, dizziness or fatigue from our fragranced products, maybe we can consider simply omitting or switching them to a fragrance-free version so that our friends or family members may remain a part of our lives. Choose Friendships over Fragrances.

May is Multiple Chemical Sensitivity (MCS) Awareness Month in many states and cities across the nation. Learn more at about this topic at the Cleaner Indoor Air Campaign, check out the Friendship over Fragrances resources as well as the campaign’s downloadable posters, or watch this video for more information.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.

This article was first published on Disability.Blog, by Disability.Gov on April 29, 2013.

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MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

 

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

A Love That’s Unbroken

Valentine HeartToday is Valentine’s Day. Many people will celebrate it with the one they love. I asked my friend, relationship expert and New York Times best-selling author of 1001 Ways to Be Romantic, Greg Godek, for his thoughts on “love.” This is what he shared.

“It’s all about love (just consult the Bible or The Beatles). But if love isn’t expressed on a regular basis, it withers (just consult divorce rate statistics.) This is where romance comes in (just consult my book, 1001 Ways to be Romantic). Romance is the expression of love. Romance is the action step of love. Now, here’s the secret that is hiding in plain sight: Romance is easy! Romance is really just creativity applied to your relationship. Romantic gestures don’t need to be grand or expensive. Actually, the best romance is the most heartfelt – the gesture that shows you’re thinking of your partner, the little gift that shows you really understand and appreciate him or her. Romance keeps love alive. And while love is desired by everyone, it is absolutely critical for couples who are dealing with invisible disabilities. You need love to sustain you through experiences that other people can’t even imagine. And in order to keep love alive, you have to nurture it every day. Every day. Romance: It’s not just for Valentine’s Day anymore.”

Greg points out that, “it’s all about love.” But what kind of love is needed to marry someone who is chronically ill or in pain? I had no idea that marrying someone who had a disability was a rare occurrence. Yet another great friend of mine, Peter Strople, told me that I was his inspiration because I married my wife, Sherri, who was already living with the debilitating effects of multiple sclerosis (MS) and Lyme disease and unable to work anymore, when I met her.

I know my wife is my inspiration, but I never thought that I was anyone else’s inspiration. Why wouldn’t I have married Sherri? She was and is funny, smart, beautiful, insightful and creative. And did I mention beautiful? I married HER. She is not an illness, she has an illness. I always tell the guys who are in disbelief, “You would have married her, too!” I’m just glad I got there first and besides, I was just getting the “in sickness” part of our vows out of the way.

We need to value people for who they are and not what they have or don’t have with regard to illness and pain. I try to live daily by Peter Strople’s great quote, “When in doubt…love.” Love first and love last.

This concept seems so rare sometimes, but after 18 years of marriage, I am starting to see some hope. I met a young couple this past weekend, Stephen and Sarah Sicola. They started an amazing company that has awesome deserts which are actually healthy for you. If you are in Austin, TX, make sure to check out Taste, AHA! Their company was born out of Sarah’s struggle with an unknown chronic illness. Stephen wasn’t deterred by Sarah’s illness; in fact, it became his mission to not only marry Sarah last December, but also to use their journey to help others with health needs. And those of us with a sweet tooth are mighty grateful he did!

IDA ambassador Antartic Mike Pierce married his wife Angela after she had a horrific climbing accident 27 years ago that broke her bones in 168 places (although you wouldn’t know it by looking at her today because of the invisible nature of her injuries).  Mike said “I do” 21 years ago knowing that Angela was not her injuries, but an amazing survivor. Mike valued her for who she was, not what she had endured.

Laura Hillenbrand, New York Times best-selling author of Seabiscuit and Unbroken, has lived daily with chronic fatigue syndrome for the past 25 years. Laura shared in a blog by Tara Parker-Pope that ran in The New York Times on Feb 4, 2011 how she manages her life with illness. She notes that her husband married her knowing full well the struggles she faced because of her disease.

“I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.”

Relationships with someone who is ill can bring extra challenges. Couples need to take time together, away from discussions of medical issues and bills. They may not be jet-setting off to a romantic island, but they can still do simple things like setting aside regular nights to have a special dinner, watch a movie or play a game. Sharing conversation about things outside the everyday problems and enjoying activities they have in common is essential to maintaining a thriving relationship.

The couples in the examples above knew that their married life would probably not be the same as that of couples who do not face illness or disease, but that the relationships were worth the journey. The husbands believed that although their wives were quite fragile in some ways, they were also extremely strong with many amazing traits to offer.

As in the story of Seabiscuit, people need someone to believe in them and to love them. Love helps in the mending process and makes all the difference. People are worth loving, especially while enduring pain and illness. When I show my wife the love and care she needs, her “brokenness” feels unbroken.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv.  You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.

This article was first published on Disability.Blog, by Disability.Gov on February 13, 2013.

MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Communication Do’s and Don’ts with Kathe Skinner, LMFT: IDA Video Seminar

Communication Do's and Don'tsIDA Founder and President interviews Kathe Skinner, MA, LMFT, Marriage and Family Therapist and IDA Executive Board Member.

Kathe also lives with Multiple Sclerosis. She and her husband, David specialize in counseling couples with a spouse living with chronic illness.

Interview by Wayne Connell, Founder and President
Invisible Disabilities Association
www.InvisibleDisabilities.org

ADDITIONAL RESOURCES

http://www.InvisibleDisabilitiesCommunity.org
http://www.Facebook.com/InvisibleDisabilities
http://www.InvisibleNoMore.TV
http://www.Facebook.com/InvisibleNoMoreTV
http://www.YouTube.com/InvisibleDisability
http://www.Twitter.com/INVDisabilities
http://www.InvisibleHero.org
http://www.CleanerIndoorAir.org

All Rights Reserved
Copyright 2012 Invisible Disabilities Association

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Being Truly Thankful

W and SIt’s hard to believe that Thanksgiving 2012 has already come and gone. Usually it falls on the last week of November,  so it was early this year. Even though Thanksgiving is now over, when I started thinking about what to write about this month,  the obvious choice was being thankful. So here it goes.

I have so many things to be thankful for this past year. First of all, I am thankful to Disability.gov for allowing me to share, on a monthly basis, great stories, ideas, tips and insights about and for people touched by illness, pain and disability (read my previous posts on Disability.Blog).

Second, I am so thankful for you, the reader. You have provided wonderful insights via your numerous comments, and have honored me with thousands of Facebook “Likes”. Please keep spreading the word and sharing the Invisible Disabilities Association’s (IDA) message though social media. I hope the stories provide comfort and validation for your daily journey with illness and pain, much of which may be invisible to others. I am also thankful for my faith, my friends, the IDA Board members, the IDA supporters and sponsors and so many others.

Finally, I am very thankful for my family and especially my wife, Sherri, who provides many of the stories I write about because of her daily life with illness and pain. I know she would rather not have a story and instead be living a normal boring life. Ours is an adventure every day. Sherri amazes me with her determination during each of life’s difficult moments.

As many of you know, because of the invisible nature of many illnesses and disabilities, sometimes family members and friends can have a hard time believing what we go through. This may be partly because they still see you the way you were before illness and pain. Even though you made the transition (and not by choice), they haven’t. Of course, because of the invisible symptoms, “seeing is believing” doesn’t always work. My advice to family and friends is simply to believe your loved ones when they tell you what they are going through.

Last week for Thanksgiving, Sherri and I traveled to my brother’s house to spend time with him, my sister-in-law, my four nephews and my mom. I haven’t been to his house in three years and it has been nine years for Sherri. Riding in the car is difficult for Sherri, and my brother lives five hours away. The four day weekend helped because it gave Sherri some time to recuperate from the drive. A shorter stay would never have worked.

What made this past Thanksgiving so special, probably the best one we have had in a decade, is that we got to see my brother, his family and my mom. But it wasn’t just seeing them in person, which was great, but what they had to do to allow Sherri to stay at their house and to interact with them.

In addition to MS and Lyme disease, Sherri lives with chemical intolerance, also known as multiple chemical sensitivity (MCS). She gets very ill from any type of fragranced or chemical product. It is estimated that 12.5 to 15 percent of Americans live with this condition. People with asthma, post-traumatic stress disorder (PTSD), autism and many other illnesses can also be impacted by the chemicals used in fragrances. You can find more information about MCS at www.cleanerindoorair.org.

I am so thankful to my family for not only using fragrance free products during our stay, but also removing all of the candles and any other products in their house that had a fragrance. They changed their laundry detergent years ago so that it wouldn’t be a problem.

One of the main issue that impacts people with illness is isolation. During our trip, Sherri and I cherished the togetherness and time with our family. Was it hard for my brother’s family and my mom? According to them, the answer is no. One of my nephews even commented that in order to spend time with his Aunt Sherri, he gladly gave up his favorite orange colored shampoo for the four day stay.

There are so many people who are in pain daily who feel left out at this time of year. Reaching out to them is not a hard thing to do. Maybe it’s a phone call just to say “hi” and let them know you care. Maybe you can bake them their favorite cookies or pie and deliver that homemade gift to them. You can also send them a card or present, although your presence would probably be their favorite gift.

On our social network, IDA hosts online chats during the holidays for those who would like a sense of community. You can help, too, by reaching out to your neighbors, friends and family who you know are dealing with illness and pain. Let them know you care. Tell them you are thankful for them, that they inspire you and their perseverance amazes you.

When you spend time with them, talk about things other than their illness. They live with the pain and disability daily and sometimes would much rather talk about the weather, the holidays, shopping or their family and friends. Together you can enjoy expressing your blessings and gratitude.

We can all make someone else’s day brighter this holiday season by sharing a smile, a hug, a card, a meal, a call or a kind word. All of these cost little or nothing, yet they can impact another for a lifetime. If we work together and love one another, we can be truly thankful for each other. Let’s all envision a world where people living with illness, pain and disability will be Invisible No More!

This article was first published on Disability.Blog by Disability.gov. November 30, 2012.

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving on Disability.gov

The Visible Invisible Disability (coming soon)

What’s So Funny About …

 

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

If It’s, “We’re Expecting” How Come It’s Not, “We’re Disabled?”

I don’t know when it became fashionable to identify pregnancy as an adventure à deux.  It always seemed lopsided that pregnancy excluded men from throwing up, having swollen ankles and shrewish moods.  I’m not even talking about all those forever changes like stretch marks, a bigger butt, and wider hips.  With the possibility of gestational diabetes, postpartum depression, or miscarriage, the adventure becomes a challenge.

Not to make it one-sided, men’s experiences are extraordinary, too, and may include being the target of a woman’s whacky moods or being the late-night junk food scrounger.  For guys, it hits that the two of you are now a family, with all the attendant expectations to be the one who forevermore protects and provides.

Without a doubt there are many, many women for whom pregnancy is a delightful experience. The glowing, the growing, and giving life is an experience like no other.  Expectant women and moms belong to an exclusive club that has strict membership rules.  So even if it was the two of you being pregnant, only one of you, in the strictest sense, is a mom.

Talk about disability or chronic illness, and only one of you is out on that limb.  An “invisible disability” can pose even more challenges.

Our society looks for proof; needs to name it; needs to touch it or otherwise experience its reality.  You can’t be “a little bit pregnant”; you either are or you’re not.  Pee on a stick and you prove it.  With invisible disabilities, there’s no pee test.  For some people, taking it on faith is harder than believing that what isn’t seen is true.  For example, not being able to prove the existence of god doesn’t mean god doesn’t exist.

Obviously, it’s the emotion surrounding belief that counts; to disbelieve or doubt a person’s physical or emotional perceptions is tantamount to discrediting someone’s very existence.  The truth of it is immaterial while the emotion surrounding such thoughts is what count and may even be rooted in jealousy of a sort – “What, so you get a break but I don’t?”  “Buck up, you’re just being lazy.”  “I worked all day but I still have to make dinner and do the laundry and get the kids to bed before I can sit down and catch my breath and where are you? In bed.”

Quantification when invisible disability is present requires a different yardstick but most of all it requires belief, support, and compassion.

Adding a stress load to any system that is already compromised results in a predictable, and usually disastrous, outcome (think of how a building with cracks in the foundation responds to an earthquake).  The same thing happens when an already dysfunctional body system is unable to respond well when stressors are piled on.  Such stressors may include walking through a mall or having relationship difficulties.

“We’re expecting” or “we’re disabled” is an implicit bonding between partners.  Life-changing events happen from which there is no return.  Legal sanctions apply in both situations:  the 20% of women, nationwide, who are disabled are entitled to lifetime support; children until they reach the age of majority.  Society doesn’t seem to have recognized that the “we” of marriage with children and the “we” of disability in a relationship are the same thing.

To say “we’re disabled” says that both partners are in it together, that there is emotional and physical support of the partner who is less capacitated. Pregnancy usually involves the active participation of both partners while acquiring disability isn’t chosen by either partner.  Parenthood never ends, just as disability does not; a major difference is in the expected trajectory – that parenting gets more pleasurable once the nest is empty, while disability often does the opposite.  Disability is different in that there is no consent, no pre-planning, and certainly no enjoyment in acquiring the condition.

Copyright 2012 Kathe Skinner, M.A., L.M.F.T.

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

The Difference You Make

“Did I read that right?”

I re-read the online invitation I received. It wasn’t an invitation anyone hopes to get. There was no ‘shhh’ finger-to-lips graphic, no indication of umbrella drinks, not even a hint of fun food.

There was, however, a beautiful photo of a radiant young woman with three young boys.

It seems a fundraiser is scheduled for someone I know, someone who is a colleague and friend. It has been a few months since we connected and this was the first I heard of her news.

My heart skipped a thump as my eyes re-scanned the text. The words took a moment to register in my unaccepting mind. She was recently diagnosed with breast cancer.

A small business owner and active business leader throughout much of the state, she has needed to curtail her activities, for obvious reasons, thereby curtailing her income, too.

It must have hurt to cut back on the passion that drives her in business and her usual accompanying dizzying schedule. What must hurt more is knowing she has three young boys to raise alone, while looking into an uncertain future, financially or otherwise.

No one ever thinks someone else will get cancer. When that someone is young, vibrant and churns out whirlwind energy that leaves the rest of us panting several hundred paces behind, it shocks something in our soul.

My soul was most certainly shocked.

The invitation said something about us needing to help someone who routinely and unselfishly gives so much while helping all of us. Yes, yes, that’s what we need to do. Give back. Even though the monetary giving back seems paltry in comparison to how much we’d like to help in a more vital way.

But that’s not our role. We can only stand by the sidelines and watch while leaving that role to her healthcare team- nurses, doctors and everyone else it will take to battle the battle inside. We trust them to fight this battle for her in the way the rest of us can’t.

Coincidentally– or not– the email I opened immediately prior to the invitation was an interview outlining the importance of the oncology patient and provider relationship. I want to ask her if she’s happy with her healthcare team that is taking care of her. I want to know that she likes them, trusts them and respects them.

It’s none of my business, really, yet I want to be assured. I write this knowing it’s not my assurance that matters.

I think back to friends and family who have fought the battle. Many won. Some did not. I remember how most raved about their nurses and doctors and techs who traveled with them on their roller-coaster journeys.

What a difference they made. Not only to their patients, but to their patients’ friends and family, most of whom they never met. They left legacies, unaware.

In whose life will you leave a legacy today, whether or not you ever read of it in print?

This article originally appeared in NurseTogether.com. Published with permission.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

Angels on the Mountaintop

Those of us who live in suffering do not realize the depth of understanding we can give to others.  Whether it is on the internet, phone, or praying and sending good thoughts to others we know who live with invisible disabilities, we can make a difference.  Sometimes our pain and sickness lead us to being lonely.  Since we are already angels, we should try to remember that we are suffering for others who do not even know they need our help.

Here are two examples of how God has been able to use me to help someone that did not know they needed my help.  One, a friend of mine was having a baby.  I went to visit her in the afternoon and found out that nobody else would be there to support her during birth.  I stayed with her, postponing my dialysis, which meant more pain for me; however, not only was I able to hold Hadley’s hand during her C section, I was the person who cut the umbilical cord.  What an experience for me to be able to hold a new baby’s hand and to be able to celebrate a new life with a good friend of mine.  I held the baby, placed her next to my Hadley’s cheek and with tears in both our eyes, we shared a quiet moment that neither of us will ever forget.

A second example was this past week.  A good friend of mine from dialysis had been in the hospital for the past 3 days.  She had a heart attack brought on by congestive heart failure.  While I was visiting her in the hospital, the hospice nurse came in and asked my friend Molly if it was OK with her that I be allowed to stay in the room.  Molly shook her head yes.  Molly and I were very good friends.  The nurse continued to ask Molly questions concerning her quality of life.  At this point, Molly was in bad shape and was fighting for her life.  The nurse asked Molly if she had spoken with her kidney doctor about the possibility of not continuing dialysis.  Molly said no.  This was difficult for me to hear, as Molly was making the decision to possibly not get dialysis treatment any longer.  The nurse was basically telling Molly that even though her mind was strong, her body was weak and was giving up.

Most people could not go to a hospital to visit a friend or family member and listen to a nurse or doctor have a life and death conversation.  Even though its difficult, its very important to be there for people like Molly, when they need us the most.  Those of us with invisible disabilities can relate to people like Molly and can truly be an angel during some of the most exciting and difficult moments in people’s lives.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

Climbing the Mountain of Weakness

“When you are weak, you are strong.” What does this really mean? For those of us who have invisible disabilities, this is a haunting statement, yet it is one of the most liberating and powerful principles available to us.  We want so desperately to look someone in the eye and say, “I’m doing great.  How are you?” The reality is that when we are hurting, we are not doing great and we find it difficult, if not impossible, to look at someone in the eye and say, “I’m not doing well at all.  Can you help me?”  When we find someone who will listen to us and understand how we are struggling, it is a huge boost of strength.

What do I mean by weak?  Simply this:  The fear of admitting that you are having a very hard time or struggling to the point of not seeing a way out.  For example, in the last 2 months I’ve come to the conclusion that I do not feel safe to drive my car due to how I’m doing physically.  Telling someone that I can’t take myself where I want to go is very difficult, as it means I have to depend on others.  On the one hand, this is a weakness, because I’m afraid to admit to someone else that I need help.  On the other hand, it is a source of strength because when I ask for someone else’s help, I’m letting them into my world; when I see that they accept me after knowing this about me, it is a great relief and source of strength.  It takes a lot of courage for me to let someone else know my weaknesses.  Regardless of their reaction, the courage that I put forth to do this, strengthens me.

Unfortunately, in our culture today, admitting that we are weak, unable, not smart, feeble, or anything other than strong and powerful is frowned upon.  Going one step further, it is my belief that we not only frown upon this, but we push people aside who are anything other than positive, strong, full of answers and fully capable of overcoming difficulties.  This is true not only for us who live with disabilities, but this attitude exists in our schools, neighborhoods, companies and families.

What does all this mean for you? Admitting that you are weak is OK.  Choose an area of your life that you’re having a hard time with.  Make a decision to tell someone you trust about this.  You will surprise yourself with how this is very liberating and how it will strengthen you.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

University Creates Awareness of Invisible Illness and IDA

McGill University in Canada brings awareness to living with invisible illness and the Invisible Disabilities Association. The McGill Daily, an independent publication, is “Currently the second-largest student newspaper in Canada and the most widely read.” It has been “the training ground for generations of journalists since its inception in 1911.”

In his article, Advocating for InvisAbilities, Ethan Yang discusses how people can accommodate those living with chronic illness. In the article, he writes about several specific conditions, challenges and judging people by their appearances. Yang also shares with the readers about the work of the Invisible Disabilities Association.

Read full article here!

ARTICLE RESOURCE

Advocating for invisAbilities. The McGill Daily. Ethan Yang. January 12, 2012.

RELATED STORIES

DJ with Disability Educates Community About IDA

Getting Assistance with Chronic Illness from College Faculty

Relationships and College with Illness

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

November Shines the Spotlight on Family Caregivers

Allsup promotes National Family Caregivers Month in November with free posters, caregiver brochures

Belleville, Ill. – Nov. 3, 2011 –More than 65 million parents, sons, daughters, spouses and others are family caregivers in the United States, but many of them remain anonymous, according to National Family Caregivers Association (NFCA). November is National Family Caregivers (NFC) Month and this year’s theme is “Identifying Family Caregivers.” Allsup, a nationwide Social Security Disability insurance (SSDI) representation company, is pleased to be an NFCA founding sponsor, and is offering free NFC Month posters and caregiver brochures to recognize America’s family caregivers.

According to NFCA, a key strategy to help identify family caregivers is to include questions about whether someone is, or has, a family caregiver on medical intake forms. “Without such information, the role of a family caregiver in the health and well-being of a person with a chronic condition is essentially negated,” said NFCA president and CEO Suzanne Mintz. “In some situations, it may be obvious that someone is or has a family caregiver, but if it isn’t in the record, it may not be taken into account when developing a care plan for both parties.” Mintz added that capturing caregiving information on official medical records can help ensure that caregivers’ roles, as well as their own health, receive more attention.

In an effort to better identify and understand caregivers with high burdens, NFCA and Allsup surveyed more than 1,500 NFCA members. The NFCA/Allsup Family Caregiver Survey provides insights on family caregivers’ needs, interests and concerns.

Among survey findings:

  • Nearly one-half (45 percent) have household incomes less than $40,000.
  • More than one-third (36 percent) care for a spouse or partner, and 42 percent care for a parent.
  • Nearly one in 10 (9 percent) of responding caregivers and about a quarter (27 percent) of their care recipients receive some type of disability insurance, with Social Security Disability Insurance being the primary type for both groups.
  • Nearly half (47 percent) of the responding caregivers were interested in getting help with Social Security disability claims.
  • Nearly two-thirds (60 percent) were interested in getting help with Medicare plan selection.

In honor of National Family Caregivers Month, Allsup is offering informational brochures on SSDI and Medicare, as well as a free gift to family caregivers during November. Anyone can access and order the brochures.

Caregivers [and patients] interested in learning if they or their care recipients may be eligible for Social Security Disability Insurance, or who would like a free Medicare needs screening, may go to Allsup.

Free NFC Month posters are available for download or ordering at , and clicking on “Request Materials.”

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ABOUT NFCA

National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well-being. For more information visit www.thefamilycaregiver.org.

ABOUT ALLSUP

Allsup is a nationwide provider of Social Security disability, Medicare and Medicare Secondary Payer compliance services for individuals, employers and insurance carriers. Founded in 1984, Allsup employs nearly 800 professionals who deliver specialized services supporting people with disabilities and seniors so they may lead lives that are as financially secure and as healthy as possible. The company is based in Belleville, Ill., near St. Louis. For more information and a Free Consultation visit Allsup.com. Be sure to mention you heard about them from IDA.

The information provided is not intended as a substitute for legal or other professional services. Legal or other expert assistance should be sought before making any decision that may affect your situation.

Above Allsup Press Release published with permission.

RELATED ARTICLES ON IDA

Allsup Applauds the Work of the Invisible Disabilities Association

Common Mistakes When Social Security is Denied

Living with Unlimited Purpose

November Shines the Spotlight on Family Caregivers

Pain and Social Security Disability Benefits

Six Advantages of Representation for SSDI

Social Security Disability Denial Rates

Spotlight Shines on Invisible Disabilities Champions

Tips on Social Security Eligibility

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Facing the Mountain of Loss: Losing a Friend

In the last two years I have lost four people I cared for very much.  They both were about my age, 45. Losing these friends forced me to face a mountain of loss that I was not familiar with. Standing at the bottom of this mountain, I had no idea what to do next.  There are others out there like me who know what its like to lose a great friend and face this mountain.  When we lose someone we love, many thoughts and emotions went through our mind.  Getting myself to move forward would take some time.  This kind of mountain made me wonder why I am here? I thought to myself, “these people were no different than me, yet while I am alive they are gone from this earth.” My first step was to face my grief, talk about how I felt and admit it made me feel afraid.  After a while I asked myself the question what was my purpose in life?

This is a mountain I did not expect to face when losing friends.  They were no longer there to talk to, laugh with, or even cry with, so it made me focus on how I wanted to live my life. I missed all four of these people and I treasured our memories together.  Somehow their death gave me the a opportunity to face my fears.  To move further up the mountain, I had to realize getting passed this pain may not happen today or tomorrow or even a year from now, but I believed if I kept trying, I would discover how to get to the top.

As time progressed, my perspective began to change. My sense of self-confidence started to grow.  When I found myself getting closer to the top of this mountain, I remembered great memories and how they touched my life. Because they died at my age, I realized you never know when your life will end, so if you can, give it your best.  Different emotions have come as time has gone on. I know that there will be times when I’ll experience their loss again,  and I will face another difficult mountain. For now I am at peace.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

Facing the Mountain of Loss: Losing a Pet

It takes time to appreciate the value of climbing a mountain.  You do not know if you will be able to make it to the top, get stuck half way, or be so frightened you stand at the bottom, afraid to take the first step.  Choices in real life are the same.  Some things we can do very easily; others we begin, but midstream we freeze and have no idea what our next move should be.

The hardest thing is when I have faced mountains that seem insurmountable.  I have been trapped at the bottom several times, afraid of what to do next.  Pushing myself forward has taken minutes, days, weeks, months, even years.  Each time I have worked through the difficulty,  I see something amazing that I did not know or understand about myself and life.  Recently, I faced a big mountain.  My husband and I lost our 18 year old cat Sebastian.  We do not have children so when he died our hearts were left empty.

He was part of our family.  The next few weeks we started looking for a new cat, but we were not into it.  It felt foreign to not have a cat but it was hard to think how we would replace Sebastian.  Two days ago we found two kittens.

They are so fun and playful.  The mountain of losing something or someone you love makes it hard to want to give to anything or anyone else.  The beauty is that when you do,  you appreciate life in a brand new way.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

Invisible Challenges with Autism (and other developmental differences)

What is Autism? According to the Autism Society, “Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a ‘spectrum disorder’ that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.”

In 2009, the Centers for Disease Control and Prevention concluded that autism had risen to 1 in every 110 births in the United States.

Lisa Lieberman, licensed  clinical social worker, author and mother of now 20 year old Jordan, said in a television interview with Better TV,  “Autism is a brain difference. … I used the word differences, rather than disorder, because I really think that we have too narrow a view of what ‘normal’ is in our culture”

When a parent discovers their child has a developmental difference such as Autism, they are often faced with denial, fears and concerns that can be overwhelming.

Lisa expressed, “It was absolutely devastating. When a child is diagnosed with a disability, there’s a death that’s occurs. And it’s the death of a dream of how it was supposed to be” (Better TV).

Following the initial shock, parents often find themselves delving into a vast amount of self education, learning of coping skills and application of therapies. It can all be so overwhelming! What’s more, parents often experience the insensitivity and assumptions that occur because of the invisible nature of developmental and sensory issues.

It is not that a person who is trained or aware of these challenges cannot see signs of Autism or other conditions. However, in many cases, the average onlooker or passerby has no idea the child contends with these struggles; therefore, when they see behaviors that seem inappropriate for the child’s age, moms and dads often get disapproving looks or even admonishment for their lack of parenting.

Lorena Burgan, mother of 7 year old Colin said, “People look at you like you’ve got three heads, like, ‘Why is that child misbehaving?” She added, “When you have a child with a physical disability, they look at you and feel sorry for you, because they can see the disability. Autism is an invisible disability. What they see is this child having a temper tantrum and you’re a bad parent” (Sault Star).

Sadly, parents and children living with Autism and other developmental differences may not only be dealing with the losses, hurdles and additional financial battles, but also the judgment from society. Like many living with invisible disabilities, people often assume the disability is a behavioral or personality issue. Therefore, let’s not be quick to assume a parent is failing or a child is simply out of control.

Autism mom, Karma Jones added, “People make your already hard life harder. They pass judgment, they make comments, they give you dirty looks. Like going out, I’ll be at the grocery store or any other public place and people stare at my kids, they give me dirty looks or give my kids dirty looks, because they just assume because my children look normal, that they are normal and that I just can’t control my kids” (Karma Jones).

In all, we should all learn the most important lesson of all and that is to not judge others by their appearances. By looking at people, we cannot possibly know the hurdles they may face daily, whether or not their challenge is obvious to us. The bottom line is that every person on this planet is one-of-a-kind, has purpose and is extraordinarily valuable.

Lisa interjected, “I used to say something’s wrong with Jordan. Now I don’t look at it that way anymore. Something is different; something is unique about him.” Lisa added, “… Jordan’s my greatest teacher; my deepest pain, but always my greatest teacher. And I wouldn’t trade him for the world now. He’s just turned into a really fine human being that has so much to offer. And he feels good about himself and isn’t that our ultimate goal as parents” (Better TV).

After all, human beings are not all cookie-cutter perfect nor the same. We all have different weaknesses and strengths. Therefore, instead of expecting everyone to fit the same mold, let’s look for each person’s individual, exceptional qualities and show them our admiration for their courage in the midst of their hurdles.

ARTICLE RESOURCES:

Autism Society

Better TV. Living with Autism. Interview with Lisa Lieberman, MSW, LCSW.

Karma Jones. Living with Autism. Vlog with Karma Jones.

Sault Star. Living with autism – The Invisible Disability. Interview with Lorena Burgman.

ADDITIONAL RESOURCES:

A Stranger Among Us by Lisa Lieberman, MSW, LCSW.

A Wiser Mind

About Autism.

Autism awareness Month a special time for Wayne family.

Autism Facts and Statistics.

Autism Society Applauds the Introduction of the “Safe Chemicals Act of 2011.”

The Autism Society Calls for Awareness and Action this April to Support 1 in 110 People with Autism in the United States.

Autism Society

Autism Speaks

Kevin Custer, 2011 IDA Corporate Award.

National Autism Awarness Month – April

Support families living with autism.

UC Davis MIND Institute

ANOTHER GREAT STORY FROM IDA:

Living with Asperger’s and Tourette’s: James Durbin contestand on ‘American Idol’

 

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Dealing with Unsolicited Advice

As many of you know, my husband has been in and out of the hospital since last October.  He is battling a rare form of lymphoma in his brain called PTLD.  During this time, I have received a lot of generous support, wonderful encouragement, and helpful suggestions from family, friends, and even strangers.  People have offered kind words via email, phone, and cards.  They have brought meals and offered to clean my house.  They have sent motivating books and given money to put gas in the car for my daily trek to the hospital.  Someone even fixed my vacuum cleaner for me!  All of this is greatly appreciated.  I only wish that everyone out there going through crises would have these same types of blessings.

But it’s time to talk about something else I frequently receive that I don’t always want:  constant unsolicited advice.  This is a difficult topic to discuss because unwelcome advice typically comes from well-intentioned family members, friends, or strangers who are saying what they think will help me.  However, I have found that continual unwanted advice can become really, really annoying.  I do try to ignore it, but it really takes all of my self-control and patience.  Some days I think I am going to snap.

When I say constant unsolicited advice, I am not talking about the information someone may give me when I ask for direction or help.  And I am not talking about an occasional loving suggestion a close friend may give when I am confiding in her about my struggles.  What I am talking about is frequent, intrusive statements made by people who feel it is their duty to tell me how I should feel, think, believe, behave, or react to any given circumstance or situation during this challenging time.

A few people believe it is their responsibility to teach or change me.  Most often, this advice comes disguised as some sort of “words of encouragement” – when in reality their words convey judgment, an effort to impart their great wisdom, and statements about how I should apply the information to my life.  Frequently, the people giving advice have not even bothered to ask me what I am thinking or feeling about that particular topic.  Rather, they presume where I am at emotionally, spiritually, mentally, physically, or otherwise.  And without this intimate knowledge, their advice can become random and inapplicable to me.  It’s important to remember that everyone’s relationship styles, grieving processes, and spiritual journeys are different.

Since I don’t want to ruin any relationships, I decided to do some research about how to respond to unsolicited advice.  I hope this information helps other people going through crises who find themselves in similar situations.

The first step I found is to discern who is giving the advice and why – and then decide whether the advice may be desired or wise to take.  For example, advice may come from a professional person such as a counselor, doctor, or even your boss – and it is typically wise to take the advice these people give.  But advice may also come from individuals such as family members or friends who may have impure motives – usually they see something that they don’t like about you and want to change it.  Some things they say may very well be true, but this is the type of unsolicited advice that can quickly damage relationships.

I found ten motives people may have for giving advice, some good and some bad:

  1. Altruism – Advice is offered when people think they can help make your life easier.
  2. Friendliness – People may offer advice to start a conversation or forge a connection.
  3. Excitement – Advice is given when people want to share something they are excited or passionate about.
  4. Needing to be Needed – People give their advice to feel important.
  5. Feeling Helpless – Some people offer advice because they want to solve your problem for you.
  6. Tired of Hearing You – People may want you to do something constructive instead of complaining all the time.
  7. Narcissism – These people need to be in the role of “teacher” at all times or like to hear themselves pontificate so they offer constant advice.
  8. Dominance – Some people may offer advice because they want to control your relationship and establish superiority.
  9. Judgment – Many people offer advice because they are passing judgment on you.
  10. Drama – A few people give advice to intentionally create conflict.

Now, if you decide that the unsolicited advice is not wanted, you can try to ignore it.  But sometimes people do not take a hint.  So if you can no longer ignore the advice-giving, I found several responses that you can give, depending how polite or direct you want to be:

  1. “Thank you, I’ll take that into consideration.”
  2. “That’s a good idea, but I have my own way of handling this.”
  3. “I am glad that works for you.  There are so many different ways of doing things.”
  4. “Thanks, but I’m fine.”
  5. “Thanks, but I don’t really need advice.  I’m already researching a solution.”
  6. “I’ll ask for advice if I need it.”

Or you can always try some funny or sarcastic comment and see if they stop…

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Jason Graham was the recipient of the 2010 IDA Inspiration Award – Read the Article and Watch the Video Here. Read the Graham Family’s Full Story Here.

UPDATE: We regret to inform you that Jason passed away on April 2, 2011. Our thoughts and prayers are with the Graham family. Read full story.

 

About Michelle Graham

Michelle Graham is an IDA Publications Contributor. Her husband, Jason, has battled a pituitary tumor and kidney disease since the age of 29. Although he had a successful brain surgery, his first kidney transplant began to fail within a few weeks. During these years, Michelle found out she had an autoimmune disease and underwent several surgical procedures. Jason was planning a second transplant in 2010, but was diagnosed with a brain mass (PTLD -rare type of lymphoma caused by transplant drugs) and has been undergoing treatment. Jason and Michelle have a son named Kendall. Jason was the recipient of the 2010 IDA Inspiration Award. Jason’s father, Tom, played in the NFL in the 70’s and his brother, Daniel, currently plays for the Denver Broncos.

Take the Time to Learn, Not to Judge

Learn - Don't JudgeThe mission of the Invisible Disabilities Association is to encourage, educate and connect people and organizations touched by illness, pain and disability.

The term “touched by” is for both the caregiver (friend, family member, co-worker, healthcare worker, doctor, etc.) and the loved one living with the illness, pain or disability.

In order to “encourage” we need to be educated which works best by listening to and asking questions of the person living with a health challenge or disability. We can tend to prejudge when with our eyes we do not see the illness or pain or when we have heard from others about their symptoms and try to broad brush all with the same results.

Education breaks down misconceptions and brings about understanding and community. Community is what people who are isolated on a regular basis need. They tend to be invisible (out of sight, out of mind). They need connection with others who care about them and for them so their times of loneliness will be few and far in between. They need to know they are loved first and then through genuine relationship, they can share about their struggles and difficulties. They need encouragement, not to take on the world or run a marathon or scale Mount Everest, but to just make it through the day, or survive the 50th doctor’s visit for the year or write a Facebook post full of vulnerability about their own life.

People touched by illness, pain and disability need each other. We all go through this life full of difficulties, some appearing harder than others yet all impacting relationships the most. Let’s believe first, develop relationship, reach out with open arms to help lift each other to our feet and hug like there is no tomorrow which for some is true.

Finally, if we don’t understand the craziness and apparent contradictions of an illness, we need to ask the person first before coming to a conclusion. Even though they know most people are well meaning with their advice and suggestions, sometimes the misunderstanding hurts more than the illness or pain itself. They want and need relationships! Let’s all learn to care about each other.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

The Brain Blog: A Season NOT to Remember

Contrary to all the jewelry store and greeting card commercials, the brain is the heart of all emotions—joy, anger, love, loneliness, excitement and depression.  With this being the holiday season, I thought it would be worthwhile talking about an all too common emotional state that some of us find ourselves in this time of year, the Holiday Blues.

By our societal views, the holiday season is supposed to be filled with positive emotions, but it’s not unusual for this time of year to bring to us packages of depression, heightened loneliness, and feelings of injustice, frustration, insecurity, and, well, the list could go on.  And, if you are dealing with the holiday blues, then you have another struggle that will most likely be tossed into your lap, the Holiday Celebrant.

These are those apparently well intentioned folks who upon realizing that you aren’t enjoying the holidays quite as much as they are try to “help you out” with verbal inoculations of holiday cheer.  And then, there are those special holiday-elves that go the next step further.  If their verbal onslaught of, “Come on, you better not pout.  Santa Clause is watching,” or “Don’t you just love all these festive decorations,” doesn’t magically transform you into a jolly person then they turn on you with, “Well, look who’s the Grinch,” or “Bah humbug to you” or the more traditional, “I guess I know who will be getting coal in their stocking.”  To this I say, “Hey, with the price of fuel where it is, a little coal might be a pretty good present.”

The key here is that, we each make of this what we want to…To each our own and to each their own.  For some, November and December are just the last two months of the year.  To others this is a time of tradition, a merriment and celebration, and to others it’s time to print copies of their behinds on the office photocopier.  As I said, the key is making of this time what you want it to be, not what you think you should make it.

My day-to-day work deals with helping seniors with emotional and cognitive challenges.  During this time of year staff at A WiserMind sees a lot of people dealing with increased levels of depression, grief and other less-than-desirable emotions.  For many, the catalyst is the self-reflection that many of us go through at this time of year.  We compare today with the times of our childhood—often with a sense of nostalgia and longing.  We compare ourselves with others—from a financial basis, an emotional basis, and even a relationship basis.  We compare our expectations with our reality.

This comparison and expectation game is played by many of us regardless of age.  It fosters and contributes to our holiday blues.  Comparing our current state to the state of others or the state of our desires is unrealistic and unproductive.  Let’s first look at comparison to others.

When we compare ourselves to others we’re actually comparing ourselves to a projection, an interpretation and perhaps a fabrication.  If we see others and say, “Look at them.  They’re happy.  They have what they want.  I want what they have.”  First, how do we know these things?  It’s very possible that they aren’t happy.  They don’t have what they want.  It’s very possible that they are miserable, just putting on appearances cause this is what they think they need to do.  Secondly, this is an exercise in futility.  You can’t be them.  You are you.  You can’t have their holiday as much as you may think it, but you can have your own holiday fashioned in your own way.

All you may want for Christmas is your two front teeth, or you may dream of a white Christmas, but these may not be possible.  It’s the desire of the unobtainable that sometimes makes us not see what we really want.  We also forget to account for what we have, or what we can get and instead waste all of our emotions and efforts on this items that are not relevant to the here and now.  Please don’t get me wrong, I’m not suggesting that we lower our expectations or that we destroy our dreams.  What I’m saying is, if you live in Miami, wishing for a white Christmas isn’t going to work.

Too many times we focus on those activities and life elements that are out of our control, well beyond our influence and only exist within the realm of our desires and concerns.  Unfortunately, as desires and concerns we they exist outside of our ability to do anything about them other than dream and worry.  And to add make matters worse, since we are spending time focusing on those items for which we can do nothing we overlook the things that we can influence or control.   This is something that I call the Life or Fear Spheres.  It is illustrated above and they are something that I’ll likely talk about more in future blogs as we discuss ways of managing our emotions, establishing priorities in life and over-coming our perceived limitations.

Suggestions…

If you are dealing with the holiday blues here are some suggestions.

  • Follow the basics for good health: eat right, get plenty of rest and keep (or get) your body moving as much as possible.
  • Do allow yourself to feel a little sad or melancholy.  These are normal emotions.
  • Try doing something for someone else.  It doesn’t have to be grand or expensive.  The little things make the difference.
  • Enjoy what activities that you can.  Try to be in the moment and not focus on the past, the future or the things that you can’t control.
  • Take action on something you can control.  This can be very empowering.
  • Be good to yourself.  Plan to make (or buy) a special meal, buy yourself something or treat yourself to an activity that you like.  Guilty pleasures are pleasures…enjoy yourself and don’t let other make you feel guilty about it.
  • If the holiday season is important to you then establish new traditions and ways of celebrating that are important to you and within your means.  If you are feeling blue about the holidays then the most important person to make happy this year is you.

And the DON’Ts:

  • Don’t over indulge in drink or holiday food…moderation in celebration is the key.
  • Don’t have unrealistic expectations about yourself or others.  Things won’t just magically change in people or yourself just because of a date on a calendar.
  • Don’t spend money you don’t have.

About Rick Watson

Rick Watson is an IDA Publications Contributor and Executive Board Member. He is also the President of A WiserMind and DRS HealthGroup, Inc. Rick has been instrumental in bringing innovational treatments to people with dementia, cognitive issues and special-needs children, as well as care to their families.

Loma Linda University Conducting Parent/Child Study

Loma Linda University’s Department of Psychology (LLU) is conducting a study regarding a parent’s pain and the effects on the oldest child.

Chronic illness and pain can not only affect the life of the person living with it, but also those around them. Throughout the years, many parents have expressed concerns in our support groups about their limitations being a burden on their loved ones – especially their children. 

Why are they doing this study? LLU says:

Research on chronic pain patients is needed to help improve the care available to them and their families. This study is being conducted as part of a student project and will try to add to the information available on parents’ pain and the effects of the pain on their child.

The study requires participation from both the parent and the child. It is done on online where participants can enter responses anonymously. The study is on a volunteer basis; so participants may stop at any time. LLU warns that there may be some risks to participating in this study:

Because some of the questions will be asking you and your child about negative feelings, this may cause both of you to reflect on your emotions. If you feel you or your child may have problems coping with emotions you may want to ask your doctor for a referral to a professional to help you with these issues. …. You and your child can stop participating at any time after starting the survey and discard any of the information you may have already entered up to that point.

According to LLU, participants who complete the survey may enter themselves in a drawing for a $20 Amazon.com gift card (about 25% of participants will receive a card).

CLICK HERE for details about this study. Currently, the study is scheduled to end in May 2011, but could end early depending on participation.

IDA is not affiliated with LLU nor this study. Participation is at your own risk; seek advice from your doctor. 

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

The Brain Blog: Three Pounds of Mostly Fat

The brain is our most complicated and essential organ in our body.  It’s essentially just three pounds of mostly fat nestled between our ears.  It defines who we are, and controls every aspect of our life.  It influences how we perceive our world around us and it is affected by that world at the same time.

The goal of this blog is to talk about all things cognitive…mental processes, emotional responses, brain health and fitness.  We cover things that go right and things that go wrong with our brains, and—where possible—we’ll cover things that you can do to make the rights-things better and the wrongs not-so-bad.  We’ll be serious and we’ll have fun.

Of all our body parts, we treat our brains in special ways, especially when it’s not working the way we want.  It make sense that we would view our body parts differently than our brains, but in some instances this difference, especially when we overlay societal views, makes for some less than healthy decisions.  We see our body parts and parts of us, but we see our brain as “us”.  If we break a bone in our leg, we can say, “My leg is broken,” but if something goes wrong in our brains—whether it be related to an emotional condition like depression or anxiety or if it’s a cognitive issue like dementia—some of us my feel “I am broken” and seek to minimize the visible signs or to deny the condition out of fear and perceived stigma.

Our brains are special, but that doesn’t mean that we need to treat a brain issue or injury in a different way than we’d treat a broken bone.  For most of us, we’d immediately go to a doctor if we suspected an injury to any other part of our body other than our brain.  But research has shown that many people down-play, deny and delay treatment for emotional or cognitive issues.  For some, that delay can be six years or more.  This is the exact opposite of what we should do.  Time is of the essence when it comes to brain health.  It’s never too soon and it’s almost never too late.

Unfortunately, in many western cultures (especially in the United States) we view mental health in similar ways as we used to view disease-conditions like cancer back in the 1950’s and before.  In decades past, you might hear,

“Did you hear about Joe?”

“No.”

“He’s got toe-nail cancer.”

“I can’t believe it.  He seemed like such a nice person.  I never saw him do anything wrong, and he always seemed like such a happy person.”

This conversation is tragic.  It’s grounded in the past-tense, like Joe has already succumb to the disease, and it implies that the person is looking for some reason why this should have happened to him…as if searching for some reason why Joe is deserving of the condition.  Today, we still hear this conversation about cognitive conditions like Alzheimer’s but the conversation for cancer has changed.  We ask, “what type of treatment are they getting?” or “how are they responding to their medicine?”  With, hope, education, persistence and compassion, I know that one day we’ll have the same reaction to mental and emotional health.

So, with the Brain Blog, we’re here to educate, inspire, entertain, aggravate and help us all make the most of the three pounds of fat between our ears.  I’m looking forward to a great conversation.

About Rick Watson

Rick Watson is an IDA Publications Contributor and Executive Board Member. He is also the President of A WiserMind and DRS HealthGroup, Inc. Rick has been instrumental in bringing innovational treatments to people with dementia, cognitive issues and special-needs children, as well as care to their families.

Finding Humor in Difficult Times – Karyn Buxman, RN, MSN

Come join us as Karyn Buxman, RN, MSN Hall of Fame Speaker, Nurse and Humorist shares a few heartfelt personal stories of her own. Karyn is the creator of the Journal of Nursing Jocularity, the President of the Association for Applied and Therapeutic Humor and an IDA Advisory Board Member.

Finding Humor in Difficult Times by Karyn Buxman, RN, MSN.

Speaker Karyn Buxman, RN, MSN shares her personal stories of illness in her family when one son suddenly had mysterious debilitating migraines, the other son battled cancer and her mom developed alzheimers. Karyn brings an insightful and hillarious message about loving others and finding humor in the good and the bad times. Invisible Disabilities Association Advisory Board Member, Karyn Buxman delivers this Amazed and Amused Keynote for the 2009 IDA Honors Banuqet. Karyn is a nurse, humorist and Hall of Fame Speaker.

Order the 2 DVD Set of the entire 2009 Banquet from IDA’s Store!

View the Trailer of the 2 DVD Set! Enjoy 2 beautifully filmed DVD’s of an Amazing Night with IDA! Special guest speaker, Karyn Buxman, RN, MSN. Master of Ceremonies CBS Channel 7News Reporter, Jayson Luber and 10 incredible Honor Award Winners! Be enlightened! Be encouraged! Share with loved ones!Order the DVD Set of the entire 2009 Banquet from IDA’s Store!

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

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