“But You Look Great” The Challenges of Invisible Illness

An excellent definition of invisible illness comes from Social Work Today online, the November-December 2007 issue:

“The term invisible illness refers to any medical condition that is not outwardly visible to others, even health care professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.”

Someone who suffers from an invisible illness faces the additional challenge of social perceptions.  No one is going to give you a hard time about bowing out of social situations, missing work, or not being your cheerful self when you explain that you have a brain tumor or bone cancer.  However, if you were to say you had chronic fatigue syndrome, fibromyalgia, lupus, rheumatoid arthritis, or chronic pain it is unlikely that you will be met with the same compassion and understanding.  In fact, many invisible illness sufferers meet just the opposite.

You Don't Look Sick

You Don’t Look Sick

Those suffering from an invisible illness spend so much time explaining what’s wrong it is practically another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions, but you also face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.  These diseases don’t receive the same lip service as diseases like cancer.  Accordingly social awareness is desperately lacking.

Lupus? Is that a kind of cat?

Lupus? Is that a kind of cat?

One of the biggest challenges of an invisible illness is that many of these diseases such as chronic pain, rheumatoid arthritis, lupus, and chronic fatigue syndrome tend to “flare.”  One day the symptoms are manageable and they appear normal, going through life just like everyone else and the next day the symptoms are out of control and the sufferer is unable to do much of anything and completely miserable to boot.  It is this vacillation that makes outside observers so incredulous of the truth and seriousness of the persons disease and suffering.  People believe that if you can get up and do it one day you should be able to do it every day.

miserable

Yes, I did yesterday, but today is a little different.

On the surface this seems like a pretty reasonable assumption.  Unfortunately, that is exactly what it is—an assumption.  It is not possible to look at someone and accurately know how they feel.  Pain is not always visible.  Someone may be smiling while wishing they could collapse and roll around on the floor screaming.  I know, I have had that fantasy.  Sadly, putting on a brave face and soldiering through is what gets us through the day, more accurately, life.  Still the downside to this is that people so often assume from this act that you are normal and healthy, so when you do lose the battle with your own body and symptoms show or you have to speak up it is met with a measure of disbelief.

invisibleillnessstronger

I have fought like crazy to keep my job.  Everything in my life revolved around making it to and through work five days a week eight hours a day.  I would rest and try to sleep as much as I could every day after work.  I had no social life because expending that extra energy lessened the chances that I would be able to go to work in the morning.  Even on weekends I made sure that one of those days was nothing but relaxing and recuperating from the work week so that I could do it again the following week.

surviveddayI was more stressed about making it to work and surviving the day than I was about the work itself.  So anxious, in fact, that it took over all other parts of my life.  It was a constant worry so severe that the anxiety started making me worse.  All of my symptoms just kept getting worse and as a result I started missing even more work.  If that wasn’t enough, even as I missed days of work I couldn’t relax and get better.  I was too busy stressing about missing work.

I'm worried that my worries are making me worry.

I’m worried that my worries are making me worry.

I never wanted to be seen as a complainer, so when I was in the office I worked very hard to appear healthy.  This created a catch 22 where I didn’t want to be seen as a complainer, but I also wanted people to understand how very sick I was.  I cornered myself to such a degree that I began to hope that I would have a major seizure in the office so no one would question the severity of my situation.  Even though I know that I would be horribly embarrassed I figured with a seizure I wouldn’t be conscious to face everyone at the time and afterwards I would feel so miserable I wouldn’t care.  I had it planned out perfectly, right up until that ambulance ride and then it all sort of fell apart.  Details–sheesh.

At the time I knew that this was a completely insane line of thought, but it is an excellent illustration of how much someone with an invisible illness struggles with the perception of those around them.  The inconsiderate comments, actions, and choices of people around us can be so devastating and demoralizing they make dealing with other people more of a challenge than the disease itself.

Lalalalalala, it was a perfectly good plan, lalalalala

Lalalalalala, it was a perfectly good plan, lalalalala

Chances are that you know somebody with an invisible illness as about ten percent of Americans have a medical condition which could be considered an invisible illness.  Ninety six percent of people with chronic medical conditions live with a condition that is invisible. These people do not use any device like a cane or walker and act as if they don’t have a medical condition. Many sufferers are incredible actors who can smile through pain and misery that would have most people heading to the ER, but if you look closely you will probably see the tightness in their eyes, the tension in their shoulders and the clench of their jaws.  The internal battle is ongoing.  Sometimes we win and can move through life with the flow of society, others we lose and have to pull out of the current and take care of ourselves. When those moments arrive remember that although you can’t see the disease the suffering is very real.  You may not completely understand the experience, but you can take them at their word.  Health is like air; it’s not important until you don’t have any.

Please, just a little understanding goes a long way.

Please, just a little understanding goes a long way.

References

“Chronic Conditions: Making the Case for Ongoing Care”. Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update).

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, cancer, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, cultural differences, depression, Doctors, fibromyalgia, health, helping, invisible illness, lupus, Medicine, Mystery Illness, pain management, rheumatoid arthitis, Uncategorized, understanding and tagged , , , , , , , . Bookmark the permalink.

13 Responses to “But You Look Great” The Challenges of Invisible Illness

  1. I completely understand. This was part of the reason my children went so long undiagnosed: they looked “too healthy” to be sick.

    • leitis23 says:

      Valarie,
      It is an unfortunate reality of our society that even doctors don’t respond unless someone looks ill. I’m sorry you had to struggle with this to. But glad to hear it was eventually sorted. Thanks for the the comment I love to hear from everyone.

  2. krittylu5 says:

    Beautifully written and certain evidence that we all just want to be validated, even if we plan out our crazy seizure plans, EVERYONE, and I mean ALL OF US with invisible illness pray for validation. Some just aren’t gutsy enough to plan a validating moment out. And to you my friend I say BRAVO, AND THANK YOU. You write for us all, believe it or not. Your writing resonates with me and I’m so glad I found you!.
    Kristi
    Your friend over at http://chronicerrata.com

    • leitis23 says:

      Thank you so much! It means a lot that people are enjoying my writing but more importantly that it is resonating with other in a similar situation. When this first happened to me I thought I was completely nuts and worse completely alone. I hope that my writing these things even if it’s embarrassing that it will make someone else’s life a little easier. Thanks again. I hope you continue to enjoy the writing and if you have any feed back or other thoughts I’d love to hear it.
      I’llbe reading yours too.
      Kristen

  3. Pingback: Invisible Illnesses | askdrhulsey

  4. Joy winstanley says:

    Brilliant!!! I have just read this out aloud to my husband and it’s so nice to totally relate to it and no EXACTLY what you are saying…. I have rheumatoid arthritis. I wish that everyone I know could read this and maybe they would be a little more understanding to these conditions! Thanks x

  5. Mel says:

    You might be interested in writing for a new storytelling blog about living with illness. Happy to promote your page and work with you on your cause as well. Let me know your thoughts, Mel http://www.myinvisiblelife.net

  6. This is the right website for anyone who would like to understand this topic.
    You realize a whole lot its almost tough to
    argue with you (not that I personally would want to…HaHa).

    You certainly put a fresh spin on a subject that’s been written about for
    decades. Wonderful stuff, just excellent!

  7. Cate says:

    Thank you.

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