The Loneliness of Illness and Pain

Loneliness-Illness-Pain-Invisible-Disabilities-Association“You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!”

When we break a leg, are we better off hopping on it or using crutches? Right after having major surgery, would we recover better if we went hiking or if we rested a bit in the hospital? We all know the answer to those questions. Otherwise, there would be mountain slopes instead of gurneys outside of every operating room.

When dealing with a broken leg, it heals and the person returns to life as usual. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Although we might think our loved ones with invisible disabilities are lazy and sleep all day, they may be having difficulty sleeping and are feeling sleep deprived. Thus, we need to allow them to rest whenever possible. After all, they are busy trying to maintain their condition and often have to push themselves hard to accomplish a few simple chores. With each activity they give their effort to, another could be forfeited and a price paid. After being limited for a while, they will begin to learn how to juggle their efforts and will discover what and how much activity causes them to hit a wall. [Read more...]

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.

My Disability May Be Invisible, But I’m Not

 

Hannah-Andrusky-Invisible-Disabilities-AssociationBut you don’t look sick.” “But you LOOK good.” “It’s all in your head.” “You just want attention.”

When most people are sick with the flu or a fever, they become pale and droopy and their hair is in a tussle. Therefore, when we meet someone who tells us he or she is ill or has an invisible disability, but he or she does not appear to be sick or in pain, we are often perplexed. Despite their appearance, we must realize that there is a difference between having a temporary cold or the flu and living day after day with a chronic illness or in chronic pain.

Many chronic conditions and disabilities are not as noticeable as a bad case of the flu. For instance, a person can battle symptoms such as extreme fatigue or cognitive impairments on the inside, even though he or she may appear healthy and well on the outside. Just the same, a person can have horrible pain or dizziness, despite the fact that he or she may seem strong and able.

IDA Ambassador Hannah Andrusky is someone who looks amazing and healthy on the outside while battling from injuries on the inside. In January of 2012, a serious car accident sidelined Hannah’s career as talk show host and stylist, as well as her confidence and self-esteem. Her ‘invisible disability‘ of concussion syndrome left her depressed, exhausted and even suicidal. Hannah’s medications caused her to gain weight and have severe mood swings, contributing to her lack of equilibrium on many fronts. A single mother and a daughter, her caretakers often had enough of the resulting behaviors.

Oftentimes, the disbelief is magnified because the person with the illness tries to put on a brave “I’m doing great” face, especially around doctors. Nobody wants to look sick. But Hannah learned that she needed to show how the accident had really impacted her, so that her neurologist could see the real extent of her injuries. Hannah writes in Living the Invisible Disability:

“I was very frustrated. He had always told me he would keep me under observation for a year and see what happens. It had been a year and a half since the accident. This doctor saw me once every six weeks for 10 minutes. I was pretty sure I knew my body better than he did. Something was still very wrong and without the proper information, I didn’t know how to heal myself. I dragged myself to his office. This time, though, I didn’t dress well or fix myself up like all the previous visits. Let him see me as I really was.

Well, it wasn’t pretty. I barely had the energy to get myself there. No makeup, no pretty dress; I showed up looking the way I did at home. One of the problems with this kind of injury is when you look good on the outside, everybody just says, “What’s wrong with you? You look fine.”

I was lying on the table when he entered the exam room. I wasn’t going to put on a brave face this time. I told him I was sorry but I didn’t have the energy to get up. It was true.

My neurologist sat down, looked at me, put his hand on my knee, and said, “Hannah. You’re going to be okay. I think you’ve had some situational depression. There’s a lot going on in your life….” He was so condescending; I nearly went through the roof.

I interrupted him, practically shouting. “Are you kidding me?! Do you think I’m sitting here in your office because it’s fun?!”

I laid into him. I was entirely done with feeling like he was discounting what I was telling him. “I had suicidal thoughts last week. Again. What is wrong with me? I… want… the PET scan!”

Without a word he got up and started typing into his laptop. “Okay. I’ll get you the PET scan.”

We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing his or her situation or trying to pull the wool over our eyes, because to us he or she looks fine. Even professionals struggle with believing the person’s illness and injuries. I find that the real experts are the ones who live daily with illness and pain, year after year.

So how can we help? As we have learned, it is difficult to recognize there is a need by simply looking at someone with an illness or injury. On the outside, they may appear physically able to accomplish tasks because their fatigue, pain and other symptoms are on the inside.

As a result, we must learn not to disregard what our loved one is telling us simply because we cannot see the damaged organs, cells, muscles, bones and nervous systems from the outside. Thus, the first thing we must do is to learn to listen, without discounting what we cannot see.

We often fear that helping others will be time consuming. We think that to make a difference, we would have to cook all their meals, run all their errands and clean their house every week. Even the simplest things can go a long way in helping them conserve energy, such as making lunch for them once a month or picking up some groceries or driving them to an appointment.

Many people are genuinely willing to help, but do not know where to begin. Because of this, we often offer by saying, “Call me if you need anything.” This is a great effort to reach out, but unfortunately, it does not work. For that reason, we cannot put the ball in their court and expect them to call us. So, how can we help if they will not ask when they need it?” Simple…we call them!

As a whole, we must remember to listen, believe what we hear, allow them to say, “No” and offer specific help that is convenient for us and them. I know Hannah’s family and friends helped her when possible with her recovery.

Many people have allowed their illness and disabilities to be a catalyst to help others on their journeys and Hannah leads by example. With faith and a keen sense of knowing she experienced these things for a purpose, Hannah began acknowledging her struggle publicly, eliciting responses from those with similar issues due to Post Traumatic Stress Disorder (PTSD), illness or the basic trauma of living in our changing world. She chose to become a student of what worked for her in her recovery process, perspective and the perceptions of the gifts she knew she was intended to pay forward. Now, Hannah speaks, teaches, coaches and has authored the very soon to be released book Living the Invisible Disability – Coping with Post Concussion Syndrome, Traumatic Brain Injury & Depression. You can learn all about Hannah on her site, Hannah Talk.

There are countless people who live with invisible disabilities. They are all around us. Even though we do not see their illness or pain, we do see them. Let’s all help them become Invisible No More.

This article was first published on Disability.Blog, by Disability.Gov on April 16, 2014.

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.

It’s Your Own Fault

Its-Your-Own-Fault-Illness-Pain

Have you ever heard the words, “Well, what do you expect?” when someone learns that a person is living with illness or pain caused by an injury from their job or hobby. Maybe that person’s job was full of risk, such as working in a gold mine as highlighted on the Discovery Channel’s show Gold Rush, or on a crab boat similar to Deadliest Catch.

Maybe they played sports and received multiple concussions and are impacted by the long-term effects or repeated head injuries. Former Colorado Avalanche hockey player Scott Parker knows this firsthand. According to Adrian Dater, a reporter for The Denver Post:

Scott Parker lies in bed, dreading what might come next. Soon after awakening, his ears ring so loud they seem like the equivalent of 100 fire alarms. Waves of nausea wash over him until he vomits. His eyes glaze over.

One of the toughest men to ever play in the NHL is knocked out, not from an opponent’s punch, but from simply getting out of bed.

Nearly six years since he retired from the NHL as one of its toughest enforcers, Parker is finding everyday life a more fearsome opponent than any he dropped the gloves against. Some days he feels fine. Many days he finds himself paying the price of years of blows to his head. The 6-foot-6, 245-pound Parker — nicknamed “The Sheriff” as a player — frequently is debilitated by seizures. He has to wear sunglasses most of the time because too much light can bring on headaches that leave him incapacitated. When Parker looks down, he cannot “track” objects. Otherwise, he gets dizzy and nauseous.

Or maybe it’s working as a stuntwoman, such as Leslie Hoffman, who noted:

As a stuntwoman, I expected to get bumps and bruises, much like any other physical career (i.e. football players, hockey players, etc.) I also have had explosions go off near me or actually had small explosions put on my body to make it appear as if I had been shot, much like our soldiers.

Little did I know, whether the director wanted me to hit my head, like the dead cook in Clue, or I made a slight miscalculation on my part and ending up hitting my head, that I would end up with PCS (Post-Concussion Syndrome), TBI (Traumatic Brain Injury) and PTSD (Post-Traumatic Stress Disorder).

When people are injured doing high risk jobs and we find they are suffering from injuries sustained as a result of those jobs, we have a tendency to not have compassion for them because “it’s their own fault.” Furthermore, because of the invisible nature of their illness, we often do not believe them. If we do actually believe them, we either blame them causing them shame or dismiss their issues altogether.

Yet, if we know the apparent cause of illness and injury, do we show compassion and care? Or do we turn away and let these individuals fend for themselves? Most people do not take on risky jobs with the intent of becoming permanently injured and disabled. They use all kinds of safety measures and equipment to lessen the risk of injury.

What about the risk of driving a car? I think of those who were injured due to vehicle crashes, such as Dr. Margaret Ferrante and Hannah Andrusky, or from a rock climbing accident such as Angela Pierce. If they were at fault for causing the accident, would we look differently at them and dismiss their injuries just like those who participate in risky jobs and hobbies?

We may believe someone more if there appears to be an obvious reason for their illness or pain. Imagine the lack of belief when a cause of a person’s illness can’t be determined.

In a court of law, people who are charged with a crime are supposed to be afforded the opportunity to be proven guilty. The prosecutor, jury and judge determine their guilt based upon facts beyond a reasonable doubt. If there is reasonable doubt, lack of evidence or no eyewitness testimony, the accused is allowed to remain innocent and go free. Even though the evidence may appear to point to guilt, it must be proven by experts in the law and not by armchair quarterbacks such as us.

This brings up a question in regards to the disability and illness community. Why do people who live with illness, pain and disability and whose symptoms are invisible tend to be looked upon as guilty of faking or lying about their situation? It seems that they are guilty until proven innocent. Although doctors have already determined their condition by spending time with the patient and putting them through tests, we still often believe we know better.

Sometimes our loved one who is suffering has yet to be diagnosed and, in this case, we think, “Well, if a doctor can’t figure it out, then maybe the person really is faking.” Yet, even doctors admit that many patients have complicated cases and a diagnosis may take years and even decades to determine. During this time, the person living with the pain and illness daily continues on in misery while having their symptoms dismissed by friends and family.

Are we all really such experts in accessible parking laws that we can make judgments whether the person parking there has the right to do so? Are we aware of the legal forms and medical proof needed to obtain a placard or accessible license plate, not to mention the shame of having people stare and even yell at you for parking in a space for which you have the right?

What if we see someone in a store with a service dog? Are our first thoughts or words out of our mouths, “Hey, I wish I could bring my dog with me everywhere, too” or “No pets allowed”? A service dog is an assistive device just like a cane or wheelchair and allows the person to function in society with some sense of normality. We have no idea how a person’s life is benefitted by a service dog or all of the amazing services the animal may perform, such as helping with balance, fetching dropped items and alerting to possible seizures or sudden drops in blood glucose levels.

It is time to let our loved one know that we believe him or her when they say they are in pain or have a disability, even though we do not see it with our own eyes. They are the eyewitnesses living every moment in a body wracked with pain and illness. They need to know we love them. We need to take their word when they state they can or cannot do something. We need to ask them how we can help, versus thinking we are their doctor, lawyer or other disability expert, or even them. We should not ignore them or dismiss them even when their actions might have played a part in their injury or disability.

“I’m not really afraid. I just want to get some answers,” Scott Parker said. “For me to have to explain the symptoms to people, they don’t know. I sometimes say, ‘Let me give you 20-plus concussions and then we can talk.’ You just want someone to believe in you, for someone to say, ‘You’re not going crazy, it’s not you.’ They haven’t pinpointed what’s wrong. It’s not conclusive.”

Let’s not be judge and jury and condemn those in pain and suffering to loneliness and isolation, but be their friend, comforter, champion and caregiver. Most people do not ask to be ill and in pain; it is thrust upon them and it is very real. Others may be guilty of participating in risky jobs and hobbies, yet their pain and suffering is also real. Let’s treat them all the same way by helping them to become invisible no more.

This article was first published on Disability.Blog, by Disability.Gov on January 13, 2014.

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.

You’re So Needy

You're So Needy - Illness and Pain“You could get better if you wanted to.” “You should just try harder.” “You’re being lazy.” “You need to be more motivated.” “You’re so needy.”

Have you ever heard any of these comments from friends and family members? Have you ever said one of these to someone living with illness or pain? Often when we come across someone who says he has been sick or in pain for a long time, we think he is either exaggerating or not doing something about it. After all, when most people get sick, they get some rest, take some medication and are soon back on their feet. So why can’t our loved ones do that, too?

What we usually do not realize is how much people do attempt to regain their health. They have seen many doctors, had tons of tests, tried lots of medications and have undergone an unknown number of procedures. Yet, as we all well know, doctors do not always have all the answers. In fact, as our modern medicine improves, chronic illness actually rises. Excellent medical care saves lives and thereby, increases the rate of chronic illness.

Many times, we view those living with pain and illness as if their situation is due to a lack of motivation or attitude. They ask for help and we think they need to help themselves. We tell them if they “would just try harder,” have a “better attitude” and use “mind over matter,” they would not be suffering. Suffering can come upon us suddenly or gradually over time. Sometimes the cause is never known or found. Yet, the way people are judged and mistrusted can sometimes have just as devastating an impact on the sufferer as the actual pain or illness. [Read more...]

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.

My Thoughts on Sharing Your Illness with Others

Alanna-Wong-Invisible-Disabilities

Alanna Wong

Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.

People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.

By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?

I also believe that talking about your illness can help with the healing process. There is so much freedom in telling the truth. You no longer have to hide or pretend. And by opening up, you also reach out to others who may be going through a similar experience, and that helps you realize that you’re not alone. The more you share, the more you inspire others to do the same. And when you heal together, you heal faster. Chronic illness can make a sufferer feel alienated, but when we share our experiences with the illness, we open up new connections with others just like ourselves, and we don’t feel so alone anymore. Knowing that we are not alone is such a comforting feeling and it can definitely help the one struggling get through a difficult period. When you share, you are also helping yourself release bottled-up emotions like anger, frustration and fear. I’ve personally found that, the more I share and talk about my condition, the less of an effect it has on me.

Sharing your story is also a great way to spread awareness. Awareness, I believe, is what leads to acceptance. When there is no acceptance, there is very little support and people tend to get left behind. Opening up about your illness can help change this. The more awareness about your condition, the less isolated you will feel. And who knows, you might even inspire others to get the help they need. With acknowledgement comes acceptance.

About Alanna Wong

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website. Alanna is writing her KLS memoir. You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/ Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore).

IDA Makes Top 10 Blogs for 2013

Type

Press Release

IDA Makes the “Top 10 Guest Blogs of 2013″ on Disability.gov

Parker, CO – January 03, 2014. IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov. We are elated to announce that IDA Made the “Top 10 Guest Blogs of 2013” on Disability.Blog by Disability.Gov. We are thrilled to receive this recognition and to be given the opportunity to bring about more awareness and education about Invisible Disabilities!

Read full story.

Thank you to all of our guest CO-authors and readers who have commented and liked our blogs, showing your support for what IDA is doing!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

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.

Truly Caring is Healthy

Truly-Caring-is-Healthy“Why did I decide to found the Invisible Disabilities® Association (IDA)?” This question has been posed to me on many occasions. The obvious answer is because of my wife, Sherri. As you may know, Sherri lives daily with progressive multiple sclerosis (MS), chronic Lyme disease, chemical injury and traumatic brain injury, as well as severe pain and bone crushing fatigue. I met Sherri in 1992 at the age of 28 after she was officially diagnosed with MS and Lyme disease. I fell in love not only with her, but also with helping other people who are living with invisible disabilities and pain every day. I wanted to be her champion and theirs, too.

But why care at all? Caring means being a part of someone else’s mess. Caring means moving from “it’s all about me” to “maybe, it is about you, too”. According to Google, the word “care” is both a noun that means “the provision of what is necessary for the health, welfare, maintenance and protection of someone or something,” and a verb that means to “feel concern or interest; attach importance to something.” I think that one shows he cares via kindness in both senses of the word.

Thus, what moved me to launch IDA was my desire to care for others. People who live with an invisible illness oftentimes become part of the shadows. They need, as the above definition states, “health, welfare, maintenance and protection,” because sometimes caring can be hard to come by. For example, my wife once collapsed at a department store and sat in the aisle for more than an hour as people just walked by. No one seemed concerned. Sound crazy? I hear these types of stories quite often.

How can caring impact a person’s health? A recent article in Wired Magazine by author Nathanael Johnson talks about the “Care Effect.”

During a research study led by Ted Kaptchuk at Harvard Medical School, patients with irritable bowel syndrome were told they would be participating in a study of the benefits of acupuncture. One group, which received the treatment from a warm, friendly researcher who asked detailed questions about their lives, did report a reduction in symptoms, equivalent to what might result from any drug on the market. Unbeknownst to them, the researchers used trick needles that didn’t pierce their skin. Now here’s the interesting part – the same sham treatment was given to another group of subjects, but performed brusquely, without conversation. The benefits largely disappeared. Kaptchuk concluded that it was the empathetic exchange between the practitioner and the patient that made the difference.

What Kaptchuk demonstrated is what some medical thinkers have begun to call the “care effect,” that is the idea that the opportunity for patients to feel heard and cared for can improve their health. Kaptchuk’s study was a breakthrough. It showed that randomized, controlled trials could measure the effect of caring. However, there was already abundant evidence from nursing science to suggest a healing power in the interaction between practitioner and patient. A study in Turkey found that empathetic nurses improved the symptoms of patients with hypertension. Midwestern cancer patients who received massages slept better and had less pain.

I have had many discussions with nurses and I asked why they decided to pursue nursing as a profession. Their answer is usually because they care about people, especially those who are sick and in pain. Caring for the invisible is one of the main reason’s both Karyn Buxman, RN, MSN, author of the What So Funny About… book series and Ali Garrett, RN, BSN, the nursing director at Roundup River Ranch joined the IDA team as board members. By showing kindness and care, I believe IDA helps contribute to the health of those we touch through encouragement, education and connection.

A recent blog by IDA’s 2013 Healthcare Honor’s Award recipient, Marlo Thomas, actress, author and national spokesperson for St. Jude Children’s Research Hospital, also sheds light on the health benefit of being kind and caring.

At first blush, stories of decency and goodness may seem trivial when compared to the constant stream of bad news that pours forth every day. But it’s just a matter of keeping perspective. For instance, would a story about a group of villagers in India banding together to save a baby elephant stop the poverty and injustices suffered by so many around the world? Of course, it wouldn’t. But it might keep us from throwing in the towel.

Or what about the fast-food employee from North Carolina who turned a young girl’s disastrous prom night into a dream date? That might not turn around the epidemic of bullying facing our youth today, but it goes a long way toward remembering that people are basically kind, and that we look out for each other.

And then there’s the New Hampshire college athlete who gave up his beloved sport — the shot put – in order to save the life of a complete stranger. That might not be the miracle cure for cancer that we’ve all been looking for, but it certainly sends a message that sometimes love and kindness are the most powerful medicines.

While we all should continue to take a deep breath and bear the harder and sadder stories that populate the front pages of our newspapers – and then, try to do something about them – let’s all remember to feed our spirits by seeking out stories about random acts of kindness, as well. Those stories are out there – sometimes you just have to dig a little to find them.

I hope the stories of kindness Marlo mentions are not so random. I think of Dave Dias, IDA 2011 Caregiver Honor’s Award recipient, who takes the time out of his busy schedule as an insurance executive to regularly blog about his wife, Irene, who struggles with illness and injury from a car accident years ago. Dave even took the time to write a book, Irene’s Journey of Faith. Dave is not alone in caring, yet we still have strides to go. I hope we can move from stories to caring becoming a way of life.

The Invisible Disabilities® Association’s mission revolves around care. We care by listening, believing, validating, encouraging, educating and connecting people touched by illness, pain and disability. We show we care by telling the world that people matter even in all of their illness and pain, even when they can barely get out of bed, even when they can’t speak for themselves and even when they must depend on others for their most basic needs.

I love the following quote from leadership guru, John Maxwell: “People don’t care how much you know until they know how much you care.” I care, and I founded IDA for this reason.  At IDA, we care and we believe. We look forward to a world where people living with illness, pain and disability will be Invisible No More®, a world where we all care and believe!

This article was first published on Disability.Blog, by Disability.Gov on August 14, 2013.

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.

Mrs. Washington Contestant Understands Invisible Disabilities

Rosie Lohr, Mrs. Washington Contestant

Rosie Lohr, Mrs. Washington Contestant

Written by Rosie Lohr, Mrs. Moses Lake

My name is Rosie Lohr. I am currently Mrs. Moses Lake and I am competing for Mrs. Washington, because it is my mission is to bring awareness to the public about invisible disabilities.

I chose the Invisible Disabilities Association as my platform and my charity, because I want to give people with invisible disabilities a voice in Washington state and other parts of America. I desire to help people understand that just because a disability may not be readily visible, they should not be denied what they need and questioned at every corner they turn. It hurts. It is not their fault and they deserve respect and not judgment.

Why am I passionate about this issue? On October 8, 1998 I received a phone call while at work that would change my life forever. The call was from my father who was at work at ASIMS, a chemical plant in Moses Lake WA. I took the call and my father said, “You need to sit down.” My first thought was that something must have happened to my four month old daughter; I began to shake. He told me there has been an explosion at the plant and I needed to get to the hospital now. Jeremy (my husband) had been injured.

When I got to the hospital it was mass confusion and no one had any answers. You see, the small town I live in was unequipped for something like this and they had no idea how to treat the men who were injured. Silicon tetra-chloride gas is a highly volatile and potent chemical that can produce “acute tissue damage” (i.e. any moist areas: lungs, eyes, nose, any sweat). It is an acid and burns these areas.

My husband was air-lifted to Harbor View Medical Center in Seattle, WA. I had to leave my daughter with family and get on a jet from Moses Lake to Seattle. The doctors at our local hospital said he may not make it, because the chemical had burned his lungs and eyes so severely.

Jeremy and Rosie Lohr

Jeremy and Rosie Lohr

After two weeks in the hospital and some touch-and-go experiences, he was sent home on oxygen and so our journey began with his disability. He was diagnosed with COPD and after many years and many prayers he regained his sight and uses oxygen on occasion, but always has it with him.

To look at him, he looks healthy. But he cannot walk up a hill, stairs or do any heavy lifting. He gets winded easily and has a cough that never goes away. We have experienced much discrimination and judgment, because he “LOOKS good!” For example, one time when we parked in an accessible spot, a person came up to us to ask for ID to prove he was disabled. At a concert event, I once had to argue with security to let us sit in the disabled seating. People love to whisper and point when I am carrying the heavy bags of groceries and he is not. They don’t understand that he would if he could! There are so many examples of this I could go on and on.

Cheer for Rosie on January 18, 2014 as she competes for Mrs. Washington at the Maydenbaur Theater in Bellevue, WA.  There are 27 contestants from all over Washington.

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 Villager Newspaper Shines a Light on IDA’s Awards Night

Wayne Connell and Scottie Taylor Iverson, The Villager Newspaper

Wayne Connell and Scottie Taylor Iverson, writer for The Villager Newspaper

Annually, since 2008, the Invisible Disabilities Association has highlighted individuals and organizations making a difference in the lives of those living with debilitating conditions.

We have done so by giving awards to incredible people across the nation. Some have faced challenges themselves, others simply have a heart for those who are hurting.

We are honored to have Scottie Taylor Iverson spot IDA out of a crowd and join us on our amazing quest.

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 10-10-13

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 10-10-13

She was so kind as to highlight IDA’s 2013 Honor Awards Banquet in the Flair! section of The Villager Newspaper and followed up the full-page spread with a very exciting follow-up story!

What a thrill to meet Scottie and have her tell her readers about our journey to bring awareness and education to the world, as well as hope and compassion to those living with illness, pain and disability.

Thank you, Scottie and The Villager Newspaper!

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 11-14-13

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 11-14-13

 

RESOURCES:

Invisible Disabilities Association to honor 9 champions from around the nation. The Villager Newspaper. Flair! Scottie Taylor Iverson. Online excerpt. 10-09-13. Membership required to view full article.

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Flair! Scottie Taylor Iverson. Online excerpt. 11-13-13. Membership required to view full article.

 

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!

Matt Barrett Gets His Wish to Attend 2013 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Honor Awards Banquet

Meet Matt Barrett, a “Walking Miracle” in Denver on October 24th. Matt will be autographing his book, A View from the Street.

Matt Barrett has lived a life most could never imagine. Matt has battled 11 forms of cancer and four brain tumors since he was just two years old.

As if that were not enough, because his face and body are disfigured by over 1,700 major surgeries, strangers have called him a monster, children have hidden behind their mothers, and store managers have asked him to leave the premises.

It is such a travesty when people are quick to judge Matt from the outside, because they are certainly missing out on getting to know this amazing person.

Animals sense Matt's gentle spirit.

Animals sense Matt’s gentle spirit.

Despite a lifetime of fighting cancer, being homeless off and on for most of his adult life, and enduring excruciating pain on a daily basis, Matt remains a giving and loving soul. 

Ask anyone who knows Matt and they will tell you he is a “Gentle Giant.” At 6 foot 4, over 300 pounds with a love for others as big as he is, his nickname seems fitting.

People on the streets don’t have a clue what they are missing when they fail to talk with this man and give him the respect he deserves. Those who hear about Matt’s journey are not only amazed, but inspired to be more appreciative of what they have.

For decades, doctors have called Matt a “Walking Miracle!” He has lived many, many years beyond anyone’s expectations. This has allowed him to continue his purpose in making this world a better place.

In 2011, Matt received a standing ovation as a Special Guest Speaker at the Invisible Disabilities Association Awards Banquet where there was not a dry eye in the house. Today, Matt was named an IDA Ambassador!

Matt has had many other accomplishments:

Matt Barrett and Sherri Connell, wife of IDA Founder

Matt Barrett and Sherri Connell, wife of IDA Founder

Although Matt has beaten countless odds, Matt’s prognosis is not good. Many doctors have told him he only has a matter of months or just weeks.

Thanks to the people who have rallied together to raise the funds, Matt’s wish to travel back to Denver for the 2013 Invisible Disabilities Association Awards Banquet is coming true!

Meet Matt on Thursday October 24th at the Denver Marriott South in Lone Tree. Details and registration: www.ItsNotAnIllusion.com

Matt Speaking at the 2011 Invisible Disabilities Association Awards Banquet

RELATED STORIES:

IDA Ambassador, Matt Barrett

A Lifelong Journey with Special Guest, Matt Barrett

Matt Barrett Gets Wish to Come Back to Attend 2013 IDA Awards Banquet

Matt Barrett’s Website, A View from the Street 

Order Matt Barrett’s Poetry Book, A View from the Street

Lifelong Battle with Illness Claims Man’s Face, Family but Not His Spirit. Martha Kang. September 27, 2013.  Picked up by Associated Press – Man’s long struggle with cancer nears end. October 15, 2013.

Photographer Tells Matt’s Story

Celebrate Life Event for Matt Barrett. May 25, 3013. Seattle, Washington.

Homeless in Seattle – Has helped Matt make 2 trip wishes reality through their supporters

Tent City 3 – Where Matt lived for three years

 

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!

“Invisible Disabilities Day Oct 24, 2013″ Proclaimed by Governor Hickenlooper

IDA Founder and President, Wayne Connell with Colorado Governor Hickenlooper

IDA Founder and President, Wayne Connell with Colorado Governor Hickenlooper

Denver, CO – October 14, 2013. We are elated to announce the proclamation of Invisible Disabilities Day on October 24, 2013. This day was brought into effect by Colorado Governor, John W. Hickenlooper.

It was requested by the Invisible Disabilities Association in light of millions living with illness, pain and disability. The Invisible Disabilities Association (IDA) is a non-profit organization, based out of Colorado.

Invisible Disabilities Day

Invisible Disabilities Day

IDA has been encouraging, educating and connecting people and organizations touched by illness, injury and disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

The Proclamation states:

  • WHEREAS, Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1996; and
  • WHEREAS, his reason was out of desire to educate friends and family about his wife’s debilitating illness and a passion for helping others; and
  • WHEREAS, millions around the globe are challenged by chronic and weakened conditions and IDA provides programs and paths for understanding; and
  • WHEREAS, IDA strives to encourage, educate and connect people and organizations touched by illness, pain and disability; and
  • WHEREAS, with the help of IDA, we may envision a world where people living with illness, pain and disability will be invisible no more;

Therefore, I, John W. Hickenlooper, Governor of the State of Colorado, do hereby proclaim October 24, 2013, as INVISIBLE DISABILITIES DAY.

Join the Invisible Disabilities Association on Invisible Disabilities Day for “It’s Not an Illusion!” October 24, 2013 at 6 pm the Denver Marriott South.

Invite your co-workers, friends, family, neighbors, community and medical teams for a thrilling evening for a great cause!

Table Sponsorships and Individual Seats available. More Information and Registration: http://www.ItsNotAnIllusion.com

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by illness, injury and disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

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!

Illusionists Illuminate Evening for People Living with Illness and Pain

Illusionists, David and Teesha Laflin

Illusionists, David and Teesha Laflin

Press Release

Colorado Illusionists Illuminate the Lives of People Living with Illness and Pain

Denver, CO – October 10, 2013. It’s Not An Illusion! Debilitating illness and pain is real, even though we can’t always “see” it.

Illusionists, David and Teesha Laflin will be making things “appear” in honor of millions of people living with various conditions becoming “Invisible No More” at the 2013 It’s Not An Illusion Awards Banquet on October 24, 2013 at the Denver Marriott South in Lone Tree.

Since 2002, internationally recognized illusionists, David and Teesha Laflin have entertained and inspired audiences through their creative blend of both classic and cutting-edge illusions. They have performed all across the United States and on five different continents. Their programs have been featured at numerous conferences and conventions throughout the world and have reached large-scale audiences through their television appearances. Last year they performed for the Women’s NCAA Final Four in Denver. In addition, David and Teesha are the creators of several illusion training DVD’s and the authors of the popular book “ILLUSIONS.”

The evening will highlight nine IDA Award Recipients who are incredible individuals and businesses making a difference for people living with disabilities. Also enjoy a Silent and LIVE Auction and a delicious dinner and dessert with Honorary Chairs, Adrienne Ruston Fitzgibbons and Jack Fitzgibbons and Emcee, Ed Greene, CBS4 Weather and News Anchor.

Join us and invite your friends, doctors and neighbors for a thrilling evening for a great cause!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by illness, injury and disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

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!

Worldwide Outreach Awards Individuals and Organizations Making a Difference

Invisible Disabilities Association Honor Awards

Invisible Disabilities Association Honor Awards

Press Release

Worldwide Outreach Awards Individuals and Organizations Making a Difference

Denver, CO – October 10, 2013. The Invisible Disabilities Association (IDA) has been recognizing individuals and organizations making a difference in the lives of those living with illness, pain and disability since 2008.

Join IDA on October 24th at the Denver Marriott South to help recognize the following amazing people
with our2013 IDA Honor Awards:

 

  • Corporate - Dave Liniger, Chairman and Co-founder – RE/MAX
  • Founders - Paul Myhill – TrafficJam
  • Healthcare - Marlo Thomas, Award Winning Actress and Author, National Outreach Director – St Jude Children’s Research Hospital
  • Impact -Kimberly McCleary, President and CEO -CFIDS Association of America
  • InspirationKevin Sorbo – Actor, Producer, Director and Author of True Strength
  • Invisible HeroJennifer Brusstar, President and CEO – Tug McGraw Foundation
  • Perseverance - Laura Hillenbrand, New York Times Bestselling Author of Seabiscuit and Unbroken
  • Research - John Kelley, Chair and CEO – CereScan
  • Volunteer - Shery McDonald-Galbreath, Founder and President – SaddleUp! Foundation

Also experience exciting entertainment from Illusionists, David and Teesha Laflin. Meet our Emcee, Ed Greene, CBS4 Weather and News Anchor, as well as Honorary Chairs, Adrienne Ruston Fitzgibbons and Jack Fitzgibbons. Enjoy a Silent and LIVE Auction and a delicious dinner and dessert.

Truly and evening of inspiring stories, touching presentations and lighthearted fun bring awareness to invisible disabilities. Doctors, nurses, friends and family often walk away saying, “Wow! I didn’t get it until tonight!”

Be a sponsor or purchase individual seats. Everyone is welcome! Don’t forget to invite your co-workers and friends!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

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!

IDA Founder and President Special Guest on Kidney Talk

Renal Support Network 2013Press Release

IDA Founder and President, Wayne Connell, was Special Guest on Kidney Talk!

Parker, CO – September 12, 2013. The Invisible Disabilities Association Founder and President, Wayne Connell was a Special Guest on Kidney Talk! on August 20, 2013.

He discussed living with invisible disabilities with Lori Hartwell of the Renal Support Network. He shared awareness, tips and insights for understanding and supporting people living with all types of debilitating conditions.

Listen to the interview online!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

RESOURCE:

Renal Support Network

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!

IDA President Speaking at The 12th Annual Twin Cities DI Day

Twin Cities DI Day 9-13-13Press Release

IDA President Speaking at The 12th Annual Twin Cities DI Day

Parker, CO – September 10, 2013. The Invisible Disabilities Association is thrilled to announce that our Founder and President, Wayne Connell will be a Special Guest Speaker for The 12th Annual Twin Cities DI Day on September 13, 2013.

The Twin Cities DI Day is recognized as the premier income protection education event in the nation!  Over 250 financial professionals come together each year to hear up to the minute information on the industry, get motivated to protect their clients and to be inspired by stories of real people facing and overcoming the challenges of disability.

Wayne will teach you the Language of Invisible Disabilities.

Wayne married his wife Sherri in 1994. Sherri was suffering from Primary Progressive MS and Late Stage Chronic Lyme Disease and many are surprised when they learn he asked Sherri to marry him anyway.  Wayne knew he wanted to spend the rest of his life with Sherri, even if it meant dealing with pain and suffering. This led to his having a heart for all who live with chronic illness and pain.

Wayne is now passionate about helping others who struggle with disabilities.   The Invisible Disabilities Association was born of his desire is to reach out and help bridge the gap of understanding and support.

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

*DI Day is Disability Insurance Day.

RESOURCE:

Twin Cities DI Day

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!

People Living with Chronic Pain Are Not Alone

NewAllsuplogoAllsup and the Invisible Disabilities Association Remind Those Living with Chronic Pain That They Are Not Alone

September is Pain Awareness Month.

Belleville, Ill. – September 06, 2013. About 100 million adult Americans experience chronic pain every year, according to the Institute of Medicine. The Invisible Disabilities Association (IDA) and Allsup, a nationwide provider of Social Security Disability Insurance (SSDI) representation and VA disability appeals, are observing Pain Awareness Month in September. Their goal is to raise awareness of common—yet often invisible—painful conditions and offer support and resources to those living with chronic pain.

According to the American Academy of Pain Management, the most common chronic pain complaints include headache, low back pain, cancer pain, arthritis pain and neurogenic pain. Neurogenic pain results from peripheral nerve or central nervous system damage. This can happen after a bout with shingles, during a stroke, through trauma (especially of the spinal cord), or from a chronic degenerative condition such as multiple sclerosis.

Many of these conditions are disabling. Arthritis, for example, is the most frequent cause of disability in the U.S., according to the Centers for Disease Control and Prevention. It affects the quality of life for about 50 million adults. Forty percent of adults with arthritis are limited in their usual activities and 33 percent report severe pain.

Conditions like arthritis, neuropathy and complex regional pain syndrome are often invisible, making it difficult for others to understand the toll they take on the individual.

Visit the Invisible Disabilities Association at InvisibleDisabilities.org

The Invisible Disabilities Association offers support to those living with chronic pain.

“Loved ones often have a hard time understanding how symptoms such as extreme fatigue and pain can be debilitating,” said IDA Founder and President Wayne Connell. “The invisible nature of chronic pain creates an atmosphere of suspicion or disbelief, even by those who are closest to you. It can be a very lonely experience.”

Pain Awareness Month reminds people living with chronic pain that they are not alone. “IDA is one of many organizations offering support and resources to people in pain, helping them connect with others and providing services designed to improve their quality of life,” said Connell.

A list of organizations and pain management resources is available at resources.allsup.com.

SSDI is an important resource. Individuals who cannot continue working due to chronic pain may be eligible for Social Security Disability Insurance (SSDI) benefits. SSDI is a federally mandated disability insurance program employers and employees pay for through payroll (FICA) taxes. SSDI provides monthly benefits to individuals under full retirement age who can no longer work because of a severe disability. They qualify for Medicare 24 months after their SSDI eligibility date.

SSDI is a valuable resource for disabled workers. However, obtaining SSDI benefits is not easy. More than two-thirds of initial applications are denied. The process can be more difficult for those living with chronic pain, due to its subjective nature. The SSA is required to consider the effects of chronic pain and the medications prescribed to treat it, but there must also be sufficient medical evidence documenting the underlying medically determinable severe impairment. Evidence of ongoing pain management treatment would add further weight and credibility to an individual’s pain complaint(s).

To learn more and to see if you are eligible for SSDI, call the Allsup Disability Evaluation Center at (888) 841-2126 or visit Expert.Allsup.com for a free SSDI evaluation.

About the Invisible Disabilities Association

The Invisible Disabilities Association encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. IDA was founded in 1996 and incorporated in 2004 as a 501(c)(3) non-profit. IDA’s website, publications, seminars and special events address all debilitating conditions that are often misunderstood. The IDA Annual Awards Banquet and Auction honors individuals and organizations making a difference in the lives of those living with illness, pain and disability. Visit http://invisibledisabilities.org/.

About Allsup

Allsup is a nationwide provider of Social Security disability, veterans disability appeal, Medicare and Medicare Secondary Payer compliance services for individuals, employers and insurance carriers. Founded in 1984, Allsup employs more than 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, Click Here. Visit Allsup on Facebook.

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!

Don’t Be Afraid of Life’s Uncertainties

Doctor VisitThis past week Mike and I went to see my kidney doctor, as we do about every 4 months.  The purpose of the visit is to monitor my kidneys and how they are doing.  It’s always like sitting on pins and needles until he reads the numbers from the blood test, which tell you everything.  Fortunately, this past week the numbers were good.

I’ve been off dialysis now for almost three years.  My kidneys started functioning to the point where I did not need dialysis any more.  This is not common and I am very fortunate. However, living with constant uncertainty is not easy.  Many people have illnesses that have no treatment options. I know firsthand how difficult it is to wake up every day and not know my medical future.  Being afraid of this is a normal response.

How I have learned to cope with fear is by talking about it with Mike or someone I know well.  There is something very healthy and therapeutic about vocalizing my struggles.  This has helped me also to accept the facts that I can’t change.

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.

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 1996 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.

My First TV Interview

Angela Pierce TV InterviewRecently, I was a guest on a local TV program hosted by Scott Kaplan and Amber Mesker.  It was the first time I had ever been interviewed.  I did not realize how simple the set up was, as I expected to see a lot more cameras, lights and noise.  It was a simple set and very quiet.

I was asked to come on and tell my story about my accident.  When the interview began, I thought it would be about how to motivate people via my story, but instead it was an account of what actually happened.  I took a moment in my mind to figure out how to bring motivation to the story, so I referenced the moment when I was put in the ambulance and told Scott and Amber that my thoughts were centered on survival.  Instead of laying in a hospital, I’ll be laying in the sun and enjoying the weather.

The way I thought I could motivate people was to tell them that the most important thing when facing tragedy was to tell yourself, “don’t give up.  You’ll have your day in the sun if you hold on to life.”  After almost thirty years, I still tell myself that same message and find it to be very helpful to me as new challenges and struggles surface.

In conclusion, here’s the message for you, the readers:  When difficulty or tragedy strikes, realize that there are many different ways you can respond.  The most important thing to remember is that you can tell yourself is that it will be OK.  The moment won’t last forever.  You are worth more than the price of the trauma!

RESOURCE

U-T San Diego – Front Page with Scott & Amber. Watch Angela’s interview. January 14, 2013.

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.