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.
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.
* 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).