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.

We need to believe them when they say they cannot do something. Simply because we saw them participating in a task before does not mean they can do it again. “Only she knows her limits and they will likely change from day to day depending on many factors. What she could do yesterday may not be possible today. Don’t question that,” Dr. Rainier says.  Therefore, we must respect their limitations without enforcing a guilt trip whenever they are already trying to do more than their bodies can handle.

Illness does not respect people according to their income or status in life. The debilitating effects force people to make decisions and sometimes even change their dreams in order to focus on their health.

Yolanda Foster, wife of famed music producer and songwriter David Foster and Real Housewives of Beverly Hills star, tells Us Weekly that she’s selling her “dream home” for $27.5 million. Yolanda explains, “This is our dream home, but due to my battle with Lyme disease for the past two years, I just don’t have the strength to run this almost five-acre property anymore and should really focus on my recovery with as little stress as possible.”

A huge part of illness is isolation. Oftentimes the overwhelming nature of chronic illness and pain drives even friends and family members away. This isolation turns into loneliness. Guy Winch, Ph.D., a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post:

“Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 percent of adults over the age of 65 will experience loneliness. Indeed, the 2010 U.S. Census found that 27 percent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”

As someone who has been a caregiver for almost 20 years, I can understand and relate to that isolation and loneliness.  My wife, Sherri, and I hardly ever have guests visit our home and the phone rarely rings, except for calls from telemarketers. We understand firsthand how people’s perceptions and misunderstandings regarding illness and pain many times cause them to stop connecting with those they are closest to.

For example, one of the issues many people with illnesses deal with is the impact of chemicals from fragrances and cleaners. Their body has to decide to fight the chemicals or fight the illness and oftentimes neither works. This illness is called environmental illness, chemical injury or multiple chemical sensitivity (MCS). It can create instant isolation from would-be visitors who love their perfume and cologne more than their loved ones. The Invisible Disabilities Association (IDA) launched the website, Cleaner Indoor Air, to help educate on MCS and the Friendships of Fragrances Campaign to bring-much needed attention to those living with it. People should not be alone, abandoned and isolated because of their pain or illness.

How can those living daily with disability and pain feel like they are not alone? IDA launched a message board in 1999, moved to a forum and then to a large social network, the Invisible Disabilities Community (IDC), in 2007. IDC has been a place of connection for more than 100,000 people throughout the years.

IDA is now thrilled to announce that we are currently moving our community to both Facebook and Google+. We are doing so in order to make it more convenient for our members to communicate through social networking communities in which they are already involved, as well as to offer a simpler format.  We have had an incredible response to the move and are elated with the feedback we have received! Both communities can be reached by going directly to

Although people often have differing illnesses and injuries, the IDC allows everyone to come together to discuss the challenges and victories of living with any chronic condition (i.e. losses, loved ones, doctors, tips and positive stories). When people can come together to talk about everyday issues, concerns and share encouraging news with one another, they feel more equipped to greet others in their lives with a more positive and less burdened heart! When a person knows they have friends who care and understand, it often gives them the strength to face the world with courage and perseverance! IDA’s goal is to provide a platform where people can be honest and unload their burdens and be met with compassion and empathy from the community. We also strive to share encouragement and a positive outlook to uplift our members.

IDA’s mission is to encourage, educate and connect people and organizations living with illness, pain and disability. IDA provides a place of both connection and encouragement through the IDC. Since May is Multiple Chemical Sensitivity and Lyme Disease Awareness Month, let’s not allow our friends and family who live daily with pain and illness to be alone and abandoned. Take the time to call them, visit them and share with them about the IDA community of friends. Join us in envisioning 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 on May 9, 2014.

But You LOOK Good


    • Cari says

      This is my life. I live with feeling no one understands. there’s no explaining it. I have no one. wish we could go to therapy as a family. but will they understand. they don’t understand unless they experience things

  1. Danielle says

    I have been living with severe depression and probably will be diagnosed with something more when it comes time to my next psychology appt in September. My close knitted family lost 6 family members to a drunk driver at once and only survivors were my 16 yr old brother and of course the drunk driver himself.
    The ones who died were my younger sister who was only 23, my baby brother who was 14 and my sister’s 4 babies and their ages were 1, 3, 5 and 7. My 16 yr old brother lives with PTSD and has been since 8/23/2003 and he had no recollection of the crash till my mom admitted him to an intensive inpatient mental facility and they triggered something in him that opened up that part of his mind and allowed him to see every one of their faces. No one has been able to help him since…..I haven’t read of another story that has been so tragic in the United states.
    I have 3 surviving sisters and 2 ssurviving brothers, I can’t speak or write for my oldest brother but as for me and my sisters here on earth, we don’t know where to turn some days because the pain is so intense and the tears won’t stop falling. I see in my mind at least once a day the image of my sister’s car mangled, her sandals still sitting neatly against the brake and accelerator. My baby brothers clothes that the hospital had cut off were given to my mom and she handed them to me and I had to see them and I can’t get the smell out of them and that was 11 yrs ago.
    The psychology center I go to here in Aberdeen SD, is a joke because I have no insurance so I am on a waiting list. I finally get to see them next month after being on a list for a year and a half! Because I am not as crucial as the next person?! I have called them crying and asking for help and they have turned me away.
    I don’t leave my apt for days at a time, I don’t shower for 2 days, I can barely get out of bed at 1pm to go to the bathroom. My children fend for themselves, they are a little older 10, 11 & 14. But they aren’t old enough to drive to go have some fun somewhere. They can’t cook full course meals. My 14 yr old isn’t always able to keep up with the laundry.
    I am glad I found this site. Hopefully I get some answers or suggestions. I am tired of the very mild antidepressants I am prescribed by wwalk in physician assistants. They don’t work and I am still a insomniac with severe severe depression with no one who seems to want to help or doesn’t know how to help me.

    • Marie Papalia says

      Hi Danielle..I understand everything you’re going through and I am so very sorry for all of your losses. I have had many losses myself so that is why I tell you I do understand your pain. I suffer from major depression..I believe it comes from the circumstances I’ve had to endure..way too much grief in my life..and I also was a caregiver most of my entire life. My pain and grief has isolated me for the past 6 years..and just recently had to be put in the hospital again because of it..I see a therapist and am on an antidepressant. I also have a relationship with Christ..and know I am never alone..but that constant feeling that I have to still go on without so many of my loved ones just hurts soo bad..every single day! Thank you so much for sharing..Danielle..and I hope for both our sake that God will somehow, someway heal our broken hearts. ~Marie~

    • Doodles Manuel says

      I hope this reaches you. I’m also in a similar situation, but I’m an truly blessed with a husband who has been able to take over. He is a single parent now, as I’m pretty much bed ridden. My boys are also 10,12, and 15. The have to fend for themselves, and it breaks my heart. I am no longer able to help myself, let alone someone else, even my own kids. I HEAR YOU! Truly hear you. I think the best advice I can give you is this: find a park, or your back yard, somewhere where there is nature, trees, grass, and privacy. You need alone time outside (bring tissues), in the fresh air. I don’t know what your religious preferences are, but it doesn’t matter even if you are an atheist. To be outside and feel the air on your face, the grass on your toes, the tree bark on your hands, to hear the birds, dogs, cats, or squirrels will fill in some of the holes, not all, but some of the holes you live with. I hope this finds you. Please take my advice, what can it hurt, make it a ritual, every day at a particular time, rain or shine, do nothing but SEE what is around you, don’t think about ANYTHING. I know this sounds counter productive, but you must only concentrate on what is around you at that time. If you live in the city, find a park. At first you may not see any results, but give it time, and never miss your appointed time for your “therapy session”. I hope all of you find the peace you need. I know the invisible ropes that hold you down are ones only you can release, but maybe someone else can show you where the knot is.

  2. says

    I wanted to take time to truly thank you for this article as all of it applies to me. I suffer from Rheumatoid Arthritis and most people either feel I am not an ill person while others just feel or think I can continue to do what I do on a daily basis. Well, it gets more and more difficult for me to do the most simple things in life. So I thank you because awareness is the key and so many are truly unaware.

    • says

      I hear you girl, some days are better than others, But some days are truly and pain fully very hard to get through. Can’t button your shirt or even zip up your pants, and you try to hide it like it’s broken; When in reality your joints hurt so bad that you can’t do basic things…………..But to tell the truth, (and I will), smoking pot really helps my pain,and it helps me to do my everyday things a little better. Anything that makes this disease more tolerable,They have my Full attention.

  3. Diane says

    I Live with Fibromayaliga, pain and tenderness all over the body. I had to quit my job. I was in retail, always moving, lifting doing whatever.
    Now it has been seven years since I work, I am very lonely and sad feeling all the time. My life style has diminish, lost a lot of friends! I was a people person, now I don’t have that!
    No one believe I have problem, not even my family!
    I really need help in finding a way of joy back into my life!

    • Natasha says

      I have fibromyalgia too as well as other hidden illnesses chronic pancreatitis and IBD and suffer from depression. My family all think I can cope day to day and are only concerned if I have a bad flare up where I’m usually hospitalised. On my last hospital stay I was physically attacked by a patient whilst in me bed I no longer want help from the hospital. I feel that doctors won’t help as they look at all of my illnesses separately and prescribe separately but the pain remains as does the tiredness! I’m sick of being called lazy as I am not im just worn out with pain and illness I was offered a wheel chair but don’t want to take it as they will all just say I’m being lazy yes my legs hurt but the pain is immense (my abdo is attached to my leg muscles) I understand where your coming from but my saying is it could be worse! I’ve worked since I was 9 years old and it kills me that in my mid 30’s I can’t do this anymore but I just stopped caring about people’s opinions and focus on what makes me feel good. Try and do the same?

  4. says

    I am never truly alone but am probably one of the loneliest people I know. I have osteo arthritis in just about every joint in my body, Fibromyalgia, tricompartmental degenerative joint disease in both my knees, degenerative disc disease in my back and a bone separation injury with degenerative joint disease in my right ankle.The allergies kick my hiney every day but I am a mother and grandmother so I must remain strong my kids are grown and out of the house but still need mom to be there. Hoping that this sight will give me a much needed boost.

  5. Beth says

    Thank you for this article. When I was 19 I suffered a spinal injury resulting in 4 surgeries and it ultimately triggered a condition currently diagnosed as Chronic Regional Pain Syndrome. I say it is the current diagnosis, because it has been diagnosed as RSD, Fibromyalgia to name but a few. I live with intensely high levels of pain that affects 85% of my body and I live in a world of damned if you do and damned if you don’t.
    If you push the boundaries, then there is nothing really wrong with you, irrespective of how you pay for it. If you follow what your doctor advises, then you are letting it rule you and making no effort to help yourself>

    3 Years ago I was diagnosed with Post Traumatic Stress Disorder, with dissociative elements resulting in social isolationism and aspects of agoraphobia. It was triggered by a series of events that lead me to recall 9 years of childhood trauma. The process for recovery is arduous and difficult and people’s lack of comprehension of how it impacts your life makes it an even greater struggle. You learn that you need to hide it away as best you can, because disclosing to those around you leads to comments of being advised you just need to get off your butt and deal with it. You just need to get out there and do something positive with your life. What people do not understand, is that it is not a matter of not wanting to do things but you are literally mentally and in my case, physically incapable of doing what they suggest. As the article states, you do not expect someone just having had surgery to go climb a mountain etc. Well for many syndromes and illnesses that are hidden, that is exactly people’s expectation – they expect us to climb mountains, I, myself, cannot answer the phone or the door. I cannot make a phone-call. I cannot go out without someone I know and trust at my side. These things trigger such severe panic that it disables any degree of functionality not just for hours afterwards, but days and even sometimes weeks. I will hide away in my bedroom and simply not come out. Sadly the PTSD and CRPS feed each other and make managing everyday life a difficult task.

    Unlike many who suffer from hidden illnesses, I am privileged to have a loving and supportive partner and equally loving and supportive children. They have learnt to read the warning signs of my PTSD escalating and know to get me away from people and to a place where I feel safe, so they can assist in calming me enough to get me home. They manage all this without touching me, because you cannot touch me. They have a playlist of set songs on their phones that they play and they talk me through breathing so I can calm.

    Silent illnesses not only need the right support and treatment, but they need understanding. It has been my experience that it is the lack of understanding that isolates people like me the most.

  6. says

    I am sincerely sorry for all of you who are suffering.Some of these stories are heartbreaking and I can’t imagine how you have continued on with your lives.I have great admiration for you and consider you to be incredibly brave.I have suffered with Chronic Fatigue Syndrome for 32yrs and I am frequently bedridden.I am losing hope of ever recovering.Only my family really understands how ill I am, as they have been here with me through this most difficult journal.

  7. Tim Shockley says

    I am new to IDA but feeling grateful to have found you. Years ago I had multiple Gastrostomy surgeries. The last one was a combination of several procedures to save my life. At the time I didn’t know that I had been living with multiple Gastrointestinal Motility diseases/disorders all my life. Over the past 35 years the symptoms of these became more pronounced and debilitating. Dumping Syndrome has been the one that has controlled my life more and more the older I have grown. Had to take a disability retirement in 2001. Today I live with chronic pain, anemia, Osteoporosis, depression, and more. Several years ago after seeing several Doctors that are involved in research of the many motility diseases/disorders I was told that because so much of my gut had been removed and the way I had been put back together in that last GI surgery the only thing that could be done for me was to try and make me as comfortable as possible with pain meds along with several other medications that are supposed to help. The pain meds are used for not only pain but to assist in slowing down the motility of my GI. over the past couple of years my ability to get out in the World and have some type of normalcy has greatly decreased. I can go out sometimes and look from the outside that I am doing pretty good while on the inside I am barely holding it together. I get the “well you don’t look sick” line a lot and blank faces if I attempt to tell someone what all is going on in the inside. I now have a port-a-cath implant so that I can be administered infusions of iron, vitamins, and other nutrients. The port was also implanted because I no longer have any veins that will hold an IV or enable blood work to be drawn.
    I posted here after seeing the article “The loneliness of illness and pain”. As soon as I saw that I thought IDA might be what I have been needing and hoping to find for a long time. I have to do everything in short parcels of time but look forward with hope to exploring both your website and social media pages. Thank you for letting me unload and thank you for being here.

  8. says

    having an autoimmune disease is the unusual condition when the very cells that are supposed to be protecting you, are fighting you. I have MS, but the symptoms seem to be on holiday. I am taking 4Life that has worked for me, but may not for some.

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