In today’s society, chronic illness is viewed as a personal failing

When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch.  That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.

At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos syndrome, a genetic flaw which leads to defective connective tissues.  This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.

I am ashamed of being sick.  I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully, and now I’ve lost it all.

Success was the first to go.  My productivity at work declined until I had to give it up in 2008.   I forfeited the income that made me self reliant, and now I’m dependent on SSDI.  My toughness collapsed when I could no longer deny how much pain I was in, and how tired I was all the time.

I lost the defining characteristics of the first 50 years of my life.  Now I’m weak, frail, and vulnerable.  I’m ashamed for not being a productive citizen and feel like a free-loader because I depend on government benefits.  I’m ashamed to be giving in to pain and fatigue, to have lost the battle I was supposed to win, to have lost the blessing of good health and vigor.

In our competitive society, chronic infirmity or illness is viewed as a personal failing rather than the random stroke of fate that it is.  If my pain and disability were temporary, I would get sympathy and accommodation, but incurable suffering makes most people uncomfortable.  They become impatient and distant, and I detect an undercurrent of belief that I must have done something to deserve this – something they can avoid doing.

If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces.  Instead, we all prefer to believe we have the power to prevent such disasters in our own lives.  Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”

In my day-to-day life, when I’m out and about among “normal” people, I try to disguise or explain away my pains, put on a brave face, and hide my feelings of failure and shame.  It fools everyone but me.

Angelika Byczkowski is a patient with Ehlers-Danlos syndrome.  This article originally appeared in Inspire.

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  • http://www.facebook.com/lilpinkpuck Jessica Ryan

    Exactly!

  • Ol’ Patient 92

    Living with diabetes, I can sympathize. In my case, I did bring it on myself. Still, compassion for others has evaporated in this country.
    My hypothesis for this is: With everyone being taxed to pay for medical care, everyone feels justified in passing judgement on your right to live or die. It’s their money you are spending, for chrissakes! It’s only going to get worse….

    • Guest

      “With everyone being taxed to pay for medical care, everyone feels justified in passing judgement on your right to live or die.”

      Well that’s true.

      If you’re plucking money out of my wallet to pay for your medical treatment, I’m interested in what I’m buying for you. Just like if you’re stealing money out of my pay check to buy groceries, I want to see what’s in your cart. And if you’re taking SO much out of my pay check that you and yours can afford better than I can for me and mine, Imma be cranky.

      Of course demanding that your neighbor foots your bills is going to make them interested in where THEIR money, the money THEY have worked to earn, is going.

      Voluntary charity is good, it brings us together. Forced charity sucks, it pits neighbor against neighbor.

      • Katie Ramos

        No one on disability is going to be living large, and creating an insurance pool to help anyone who suddenly finds themselves unable to work is just plain smart. What if you suddenly couldn’t walk or function in some way? I bet dollars to donuts you’d be pretty cheesed if some random people with no medical expertise or other authority suddenly felt like they had a right to weigh in on your health and the decisions made between you and your doctor.

      • PJ Dew

        Well, speaking for myself, I will say this. Until Nov. 11, 2009 (great way to celebrate me serving my country!), I was in perfect health. Saw the doc once per year and on no meds. That all changed on Nov. 11. I was hospitalized in ICU for 5 days in DKA (diabetic ketoacidosis). I was now a Type One (Juvenile) diabetic. I had just completed nursing school and started a new job, so I had no insurance. I was on food assistance. Hospital bill was 15K and my medicine that I need to live (if I don’t take it, I die.), was well over $300/month. Testing strips are about $1.00 each and I need at least 4 per day. That’s another $120/month. Syringes are about $60/month. I need all this to live. Until the insurance benefits to my new job took effect (another 2 1/2 months), I had to rely on help from the drug companies and grants from the hospital to get what I needed to live. So, yeah, I paid in for years, never used it, so I don’t feel bad at all using it when I needed to.

      • POAndrea

        Three days before my husband became ill, he received his Social Security summary indicating he had accrued 158 eligible quarters. (That’s 39.5 years, in case you were interested in the math.) As of MY last summary, I have accrued 161 quarters. Only one of us receives assistance. Do you think our household has contributed enough yet to make you feel the tiniest bit better about “you and yours” footing the bill for my husband’s seven quarters of medicare eligibility?

  • http://www.facebook.com/andrea437 Andrea Martin

    I also have EDS. Your story sounds exactly how I am feeling. I have been unable to get SSI so far (still in appeals), but for the first time I am completely dependent on my husband’s income. I had gone through 8 surgeries, including hip replacements to alleviate the pain so I could get back to work and my life raising 4 kids. Unfortunately I had to have a serious complication before I was diagnosed. Years and years of doctors and tests, followed by meds and more meds, I was desperate for answers. No one believed me since I had been “tough” my entire life. Thank you for sharing your experience and story. It is embarrassing…and I was embarrassed to even say that to anyone. I hope you find the relief and support that you need.

    • https://twitter.com/#!/zerses Zerses

      How can these moronic people see surgeries, some even botched, and not understand that it can, does and will impact your life YEARs or DECADES after the incident??

      Social Security is full of people who are drunk with power, believe far too many who have gone to doctors over boo-boos while very disabled persons are left to fight until they usually die or turn 62-65 while waiting and fighting.

      As it is it’s a horrid fight, our lives are turned upside down by lawyers, administrative judges and clerks who don’t care about the REAL disabled.

  • Angelika Byczkowski

    Thank you, Andrea, for pointing out the another aspect of having an invisible illness. When multiple doctors over multiple years don’t believe what you’re telling them, it’s hard not to feel crazy!

    I thought I was all alone until I found the Inspire EDS forum. There I discovered that most people in my situation share my thoughts and feelings – and symptoms (which I was told were just “in my head”) . Sharing my troubles and fears with a group of people that understands my situation has given me the courage to stop hiding and speak out.

  • https://twitter.com/#!/zerses Zerses

    I’ve been chronically ill most of my adult life – I had a two infections before getting married and becoming a military dependent.

    I have had an amoeba infection that tore me apart for months – and I was told it was in my head until a doctor FINALLY did a stool sample.

    Lupus – and concomitant light sensitivity

    Destroyed intestines from doctors dumping drugs into me for decades, mostly antibiotics without any investigation whatsoever.

    I have been cut by doctors with speculums after they have been told I am tender from having lupus …

    Sleep apnea – ‘You are too thin to have sleep apnea’ THREE sleep studies and 8 years later my machine is not enough and doctors aren’t listening, I need oxygen.

    Misdiagnosis of “asthma” which with all the drugs they dumped into my already damaged lungs… wow, the follow-on damage has been HARD to keep to a minimum.

    There’s more… and MANY, MANY, MANY people are being mistreated by doctors who won’t keep up with changing research – I had to BEG for an ultrasound because I AM over-x-rayed – and the only thing TWO of the doctors in that same practice would do instead of truly helping was to offer me steroids – yep, turn off my very damaged immune system – I am NOT ready to DIE.

    A knee/leg that is useless after two doctors who didn’t care about me at all botched and damaged my right knee so much so that I have no reflex and I fall A LOT – my LEFT leg is almost perfect after a similar operation – but the difference what, he cared about ME.

    The correct drug and a month later I am hurting less in some places but one doctor who is out of my “network” isn’t going to help fix what many doctors caused – my pancreas or gall bladder are hurting hours after eating (not heartburn – no burning in stomach or esophagus pain), severe pain in my ** lymph nodes **, heart, spine, and more migraines than I have had in decades.

    Seems I am at risk just as much as my mother was for breast cancer – but my mother’s couldn’t be found because they would not aspirate a “soft mass” which I had taken out in 2005 with a breast resection.

    I am in pain and it doesn’t seem like any doctor cares enough to understand that many of the issues I am facing have been the direct cause of medical malpractices by many doctors – I am damaged, they aren’t, doctors need to know ******they are doing harm.********

    • EE Smith

      I feel so awful for you, and for all the others who have been in similar positions. I’m so sorry this all happened to you. But please don’t think of yourself in terms of being “a military dependent”. If you are the spouse of someone who serves or has served our country, you have served too, in your own very important way. Salute, and best wishes. I sincerely hope things get better for you.

  • Katie Ramos

    I understand your frustration SO well about how people perceive and treat us (I’m also am EDS patient), but TRY not to think of yourself as a freeloader for receiving SSDI. You worked for DECADES paying into the system like everyone else, and now you are receiving your insurance payments as you have a right to. It makes me crazy when healthy people consider those on disability freeloaders. You paid for that benefit like everyone else. I know its hard to think that when so many people around you say otherwise, but those are the facts, and that’s what you should tell anyone who calls you a freeloader or similar, including the “Guest” down there.

  • http://www.facebook.com/profile.php?id=1611638692 Wyvonia Woods Harris

    I am always pleased when an article appears to affirm what I teach in a Bible Institute Class in my Church. The class is “Ministering to the Acutely and Chronically Ill” and this article enhanced my understanding to the mind, body,spirit aspect of self care before share care.

  • http://www.facebook.com/jessicajacobsonkimbrell Jessica Leigh Kimbrell

    Everything about this post rings true with me as well… I’m only 27 and find myself humiliated in public, although I’ve tried so hard to come to terms with my EDS diagnosis. Our society simply does not like illness nor the chronically ill, and I usually feel regarded with either uneasy pity or a sort of condescension..

  • http://www.facebook.com/catharina.loonen Catharina Loonen

    I must say that I kind of feel the same way. Even when I can rationally say that virtually nothing can be done, especially with how ME/CFS is dealt with in my country, I have much difficulty with trying to shake loose the feeling of being a freeloader, surviving on Tax payers money.

    When one cannot contribute to society in any kind of way, it is most often seen as personal failure because achievement in any form of way is seen as personal success.

    Pity that our society seems to applaud little else than personal success in any possible way it surfaces.

    • Guest

      You too should applaud personal success. If SOME people at least weren’t successful, there’d be no one to support you.

  • http://www.facebook.com/carol.hogg.56 Carol Hogg

    i can totally relate to this feeling, i have had m.e. since the age of 12 (though wasnt told till a decade later) i am now 41 and for the past 10 years my illness became severe, leaving me bed bound a lot of the time, and have to live with my parents.. over the last few years especially i have felt increasingly useless as the media and government as you know have relentlessly persecuted it us – however i am no longer in that mind set – people like us as just as important as the rest of the population and we have every right to have a life – okay so i cant work – what exactly is work anyway.. a footballer kicks a ball on a field, a tv presenter sits in front of cameras and talks .. a prime minister sits on his ass and devises new ways to squeeze blood from a stone while lying through his teeth and driving decent people to suicide.. the world is changing, the world of work is changing – its my bet every single one of us does something, someone, somewhere classes as their job.. or has done in the past.. so remember next time when you’re feeling like crap.. everything is relative and you have as much to give as the next – even if most of this dumb world hasn’t woken up to that fact yet.. just be who you are and enjoy your life as much as you can

    • P. Littleton

      “i have had m.e. since the age of 12 (though wasnt told till a decade later) i am now 41″

      You wouldn’t have been told you had “M.E.” in 1994. You might have been told you have “Chronic Fatigue Syndrome”.

      The Royal Colleges of Physicians, Psychiatrists, and General Practitioners would point out that adopting the term “myalgic encephalomyelitis” for “chronic fatigue syndrome” is controversial, since chronic fatigue syndrome has not been associated with any pathology of the muscles or central nervous system.

  • chrliechaz

    This is SO true. It’s why I am against charging people penalty fees (in some of the new employee-based wellness plans) for behaviors like smoking or weight, because I believe this will eventually be applied to pre-existing conditions where we will all be charged for getting something different in the genetic lottery that we could not control or predict in some cases. People with chronic illness are also often labeled as lazy, flakey, and other designations, when living day by day is an immense challenge. The hardest work I have ever done in my life was being a patient.

  • http://twitter.com/_Ashbet_ Andi S

    As another EDS patient, I very much relate to this — I never wanted to quit my job, at the height of my career success, or to have to depend on family to supplement the minimal SSDI pension that I receive, because I don’t earn enough to support both myself and my daughter, who also has EDS, and has never been well enough to work.

    Your words echo the suffering of many of us, who were very happy living a productive life before chronic illness struck us down.

  • http://twitter.com/_Ashbet_ Andi S

    So, some people are criminals who scam the system. Does that mean that all the legitimately disabled people should not be cared-for? I paid into Social Security when I worked, and certainly didn’t feel entitled to judge others who had been less fortunate.

  • AKMaineIac

    Not much different than our attitudes toward the elderly… It scares the hell out people, because they see themselves.

  • Ginger

    Blame the victim runs rampant through the media and society when it comes to health issues! People want to think they can avoid whatever you’ve got by blaming you for getting it. The media is full of stupid articles talking about how your “risk” is increased or decreased by certain actions — very few of which are statistically meaningful. I concur, they see themselves and think they won’t be you someday.

    • serena blackcat

      Yeah, there is victim-blaming for many different misfortunes which are not a person’s fault…mostly people want to believe that life is fair (while actually making life LESS fair), that they have control over their fate or that they are smarter and these things could never happen to them.

  • http://www.facebook.com/people/Debbie-Thompson/100000225773725 Debbie Thompson

    Angelika – As a late stage Lyme Disease (and late stage Rickettsial infection – Rocky Mountain Spotted Fever) victim/sufferer/survivor, I know exactly how you feel. I have also been denied disability, and access to medical care. Basically left to die. That was insult to injury. The reason that the illness is so late stage, is because of many years of “in your head” diagnoses. I feel like a Tuskegee victim.

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