But You Don’t Look Sick

Being functionally disabled while outwardly appearing well is problematic.  I suffer from multiple chronic illnesses, each of which are either somewhat invisible to the viewer, or relapsing-remitting in their nature.*  This has never done much for my credibility when it comes to asking for accommodations, treatment or even sympathy.

reenacane

Rockin’ a cane in NOLA

It’s strange what a difference a cane can make.  I’ve used one for about 15 years now, on and off, but not all the time.  Which confuses people.  They have seen me (apparently) able-bodied and I’m still relatively young, so they ask “what happened?”  Even people who’ve asked me this question before forget the answer.  I have arthritis, and have had it for almost 20 years.  And even when I’m not using the cane, I have pain and stiffness.  The cane is just a tool.  And whether I choose to use that tool is often a push-come-to-shove decision.

Because I don’t enjoy the questions.  It’s not that I don’t understand people’s basic curiosity and concern, but 20 years of answering the same question can wear on a person.  But at the same time it is my own ‘fault’ for not assuming a more clearly defined ‘disabled identity’.

Like a lot of people who have disabilities, I don’t always want to make that my sole identity.  I acknowledge that there is a certain amount of privilege in not having to do so.  But it is still frustrating when I can’t get a seat on the bus when I really need one.  Or get dirty looks for taking the elevator instead of the stairs (or worse, having the only elevator be a wheelchair lift and being too embarrassed to ring for assistance without a wheelchair).

And this goes for my other disabilities as well.  The thing about having multiple chronic conditions is that even though separately they might not amount to total disability, their cumulative effects combine to create an unpredictable level of dysfunction.  On any given day I face complex physical and mental challenges that can feel too difficult to explain to people, especially strangers.

So I tend to spend a lot of time either not asking for the things I need, or just avoiding situations where I can’t control my environment.  I sometimes don’t ask for food and drink when I need it, because access to bathroom facilities is unpredictable.  I turn down invitations or leave early because there isn’t adequate seating (or only uncomfortable seating which will end up setting off a flare in my back or neck).  Depending on where I’m at mentally, I sometimes can’t handle spaces that are too loud or too crowded.  And when it comes to commitments I generally prefer to avoid them because I hate disappointing people when the day comes and it turns out I can’t follow through.

I suppose if I would just ‘accept my lot’ and invest some time in developing my identity as crippled, then people would lower their expectations of me.

But that’s a double-edged sword, isn’t it?  The last thing I want is for people to write me off.  And I’m not sure I want people to go out of their way all the time to open doors for me, carry things for me, or any of the things which go along with being seen as helpless.

Except sometimes I do want those things.  Sometimes I need those things.  The real battle I’m fighting here is with myself.

I still want to control when I’m perceived as disabled.

It’s no wonder that people have a hard time knowing what to do with me.

I guess what I need, in a strange way, is confidence in my disabled identity.  For most people, unless they are born with their disability (and maybe even if they are born with it), adjusting to living with chronic illness or physical and mental limitations is a process.  And specifically for people whose diagnoses came after long periods of uncertainty about their conditions, there is already a sense of having to ‘prove oneself’.  Especially with disabling conditions that are not visible to the naked eye.

I have a lot of emotions associated with being disabled, showing those disabilities and asking for accommodations:  Guilt, shame, insecurity, embarrassment, helplessness.  They get in the way of me making good choices in terms of self-care and being a good advocate for myself.  Of course, I have no problem with speaking up for others in similar circumstances, so it stands to reason that I should be able to do these things for myself.

It is only recently, after being unemployable for several years, and suffering new symptoms which have limited me from doing some of the things I love most, that I have had to face the truth that there is no going back.  That I need to make peace with the fact that being disabled is a full-time reality.  It is part of my identity whether I like it or not.  There is no escaping that fact, and if don’t start exercising better self-care and speaking up for myself when I need to, there are real consequences.  I am the one that suffers in pain for days because I sat on the ground for too long or exerted myself physically when I shouldn’t have.

And I need to stop worrying about what other people think about the choices I make.  There isn’t going to be time to explain myself to every person who doesn’t perceive me as disabled.  And that’s okay.  People make judgements about us everyday.

I have to stop trying to manage everyone else’s version of reality and worry about my own.

/rk

* What the heck, for the sake of clarity and perspective, here’s a list:  Arthritis and joint problems (ankylosing spondylitis, enthesitis, costochondritis, chronic tendonitis and degenerative disk disease); Crohn’s disease with fistulas, ulcerative colitis, and short bowel syndrome (my colon was removed in 1996); bipolar  I disorder with mixed episodes and rapid cycling; Asperger’s syndrome; non-insulin-dependent diabetes mellitus; chronic kidney disease; peripheral neuropathy and asthma (and scent-sensitivity).

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8 thoughts on “But You Don’t Look Sick

  1. We both suffer from piles of chronic problems and I found your mechanisms of cope to be fascinating, since our approach is so wildly different. I am also coming to the conclusion that I have an incredible ability to be obtuse about myself to a point it may cause damage in the future (and this would be par for the course). This is permanent damage to my lymph nodes in my right leg due to flesh eating staph, a permanently broken wrist, the permanent damage Lyme disease did in my ears (high volume screaming in my ears) and joints (arthritic like joint pain).

    I think I am fortunate enough to be selectively obtuse. My brain knows I have no choice so works to ignore it. The second my brain realizes I have an out, I feel every last bit of that pain. A good example was prior to moving to Canada, I worked in a Home Depot, third shift, stacking all the heaviest shit all night because I was a big, deaf (therefore untrainable) man, this meant my job was the heavy shit. The fact that I had a broken wrist did not matter, the only thing I had to offer the job was that I was strong. My brains did not matter, because I could not hear, my prior education did not matter, because it was incomplete.

    I did it for nearly 3 years.

    However, once I got accepted into Carleton here in Canada and secured my funding, once I did not need that job any longer, the pain became unbearable. It was just too much, and it still is. This has always amazed me, not so much the ability to ignore pain, but the fact I became incapable of tolerating it once I did not have to.

    So my truth is that I cannot face my pain. I cannot do what you do and reflect on it, I think it would cripple me. I do not know if I could get out of bed in the morning thinking that I have another 40 years of this. In many ways I am like the protagonist in Memento, moment to moment forgetting what already happened. I pay for this, but even when I pay for it, it is just that moment. No matter what happens I never face the pain, I guess my brain ignores it if I have no choice (working at Home Depot) but the second I have a choice, I cannot face it.

    Your ability to explore, analyse and reflect on your pain is both alien and horrifying to me. I could never do what you do. This is why old age is something that frightens me, because someday, I will be given an out, I will not be forced to do what I need to do to survive, I’ll be able to retire and on that day I fear my chronic illnesses will slowly overtake me because I won’t have to ignore them any longer.

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    • It’s interesting John, because I don’t think we’re all that different. What you’re describing is very similar to what I went through when I developed my first and even my second chronic illness. I kept going, each time pushing through because I had to and going back to work, only to develop new illnesses which knocked me out of work again. I think the difference comes from the fact that after having to face so many successive setbacks with my health, my ability to cope is just not the same. Bipolar is also a pretty heavy factor that can’t be ignored in all of this — trying to deal with pain while dealing with altered reality adds a spin on things that is hard to explain.

      My coming to terms with being disabled is an ongoing battle and it’s a form of self-preservation. Many of my conditions have been exacerbated by not slowing down and accepting limitations. I’d like to stop the steady decline in my health and the only proactive way to do that is to start making it a priority. Some of claiming a ‘crip’ identity is to stop the pattern of shame and withdrawal that I have developed as a defense mechanism, as well as trying to move forward and find other ways to define myself. When you lose your job and suddenly find yourself limited by your health it’s hard to figure out who you are anymore and what value you have in the world.

      We all have different ways of coping, and I don’t think any are better or worse, necessarily, just different. I know you have a lot of challenges (some of which I understand and some of which I probably can’t) and of course I wish you much support! Thanks for sharing. *hug* Reena

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  2. Well, I think the point is that I *cannot* deal. My brain knows that I cannot deal so pushes it to the side. My cope is completely subconscious, I have near zero concious coping mechanisms for pain. I cannot even receive a needle without getting ill. It might stem from some serious complications/experiences I suffered as a child and the pain was too much for my little brain.

    You cope, you deal, you face it. I internally lie to myself that it is not there in a very real and convincing manner.

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  3. I survive, in spite of a lot of the same issues you face. Everyone is just unique and we are mostly all wonderful (and probably all mostly wonderful) and I think your blog is (writing and thoughts are) great. I first read the poem about fb friends and now I will follow you (muhahaha). On your blog, I mean. I’m not scary.

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