Blank Stares, Lipstick and Mobility Aids
Learning to Live with an Invisible Disability
Imagine waking up one morning and not being able to get out of bed. Fast forward a couple of months and you still haven't found any relief from your pain. You are not able to do all the things you once could, in fact, you can barely cope with daily life. You get tired of the sympathy looks, their pity, so you stop telling people how you really feel when they ask. I'm OK, is all you say. Doctors brush aside your concerns. It'll get better, there's nothing we can do, take a muscle relaxant. Your bloodwork is clear, nothing is wrong with you. You even start to doubt yourself. Maybe it isn't as bad as you think it is. But something is wrong, very wrong.
Your hands start to turn blue occasionally, your lips too. You start to wear lipstick so no one sees your blue lips, so no one worries. You isolate yourself from others because you want to shield them from your suffering. You choose not to participate in normal activities because you don't want to ask others to make accommodations for you. You lose so much weight, and people praise you, wishing they could lose weight too. Not like this, you think. You are in pain from the moment you wake up to the moment you go to sleep. Painkillers only provide enough relief to barely function. You are tired even with a full night’s rest. You need to balance activities with rest so you don't become burnt out, stuck in bed all day to recover.
And no one can see it. No one understands.
People look at you like you are speaking a foreign language when you talk about your experience. Their eyes glaze over, and they nod robotically, eager to change the topic of conversation. For most people I meet, my experience is one they’ve never encountered before. They have no prior knowledge of an invisible chronic illness, and no shared life experience they can pipe in with. For those who know of people who suffer from these types of illnesses, conversations revolve around how their sisters’ friends cousins got better with a magic diet, with yoga, by holding their nose and standing on one leg. These people are well-meaning, and I understand the need to help fix the problem. Heck, I’ve been that person to offer unsolicited advice. However, my disability is not something to fix; rather it is part of my identity.
My Disability is Part of Who I am
Disability, in whatever form it takes, makes most people uncomfortable. In our society, there is a common theme of ableism, which Merriam-Webster defines as the discrimination or prejudice against individuals with disabilities. I much prefer Rebekah Taussig’s definition of ableism as identified in her book “Sitting Pretty”. She defines ableism as “the process of favouring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look or need differently from that vision.”
When there is something wrong, we want to fix it. The problem with disability is that we see it as wrong. That person is less than or defective because of their disability, and as such, are not considered a fully functioning member of society. This idea is so prevalent, even people with disabilities grow up with an internalized ableism, making them feel less than compared to their non-disabled counterparts.
Unfortunately, our society doesn't want to accommodate people with disabilities. That would mean that we would need to live with the uncomfortable truth that overnight a healthy 27-year-old can suddenly have the mobility of an arthritic 89-year-old. With no known cure. No magic pills.
I have a unique perspective in that I understand what it is like to be both non-disabled and disabled. But I still have that internalized ableism that tells me because I have a disability, I can no longer enjoy life the way I used to. This idea is wrong on all accounts. In a society that tells us we are not good enough, we need to challenge that by focusing on what we are good at, what we can do.
And you may be reading this article and be thinking “I’m not disabled, this doesn’t affect me”. I would like to take the opportunity to gently remind you that anyone can become disabled at any time. You may be diagnosed with a chronic illness; you might lose your sight or hearing. You might lose your mobility in an accident. Being disabled is not a personal failure. Non-disabled people are not inherently better than disabled people, although our society mistakenly implies that they are.
If you are new to Ableism, I would recommend you listen to this podcast by Arthritis Life, where the host Cheryl discusses Ableism with guest Lene Anderson.
Your Struggle is Real
I struggled for months with doctors who told me that the pain would go away - but it might come back! They told me I should exercise to reduce my pain – we don’t want you taking those pain killers! They stopped short of telling me it was all in my head. But every trip to the doctor where they would tell me my bloodwork was normal and there was nothing wrong with me, I began to seriously doubt my experience. Was it really as bad as I thought it was? Spoiler, it was.
If you are in this boat, I’m sorry to say my friend you have been blessed with a battle. You will have to fight for yourself or have a trusted friend or family member to fight on your behalf. If you let it go, the medical professional will do nothing. They will not lose sleep while you lose months, even years of your life. If your medical professional is not taking your concerns seriously, ask for a second opinion. Change practitioners if need be. You are now your own advocate.
What you’re going through is real. Yes, it is impacting your life. And yes, if it is invisible, there may be people around you who don’t believe you or don’t understand.
Not everyone will, and that’s OK. It’s OK to distance yourself from these people. It’s OK to lean on the people who are empathetic and understand what you’re going through.
Find a Community
When I was diagnosed with an autoimmune disease I was living away from my family. I hated having to tell people that I was struggling. I hated myself for the fact that I was sick and I wasn’t getting better. I hated my blue hands and lips that made myself and others around me uncomfortable. I hated that my disability required other people to accommodate me.
So, I started lying. I told them I was OK. I wore lipstick to cover up my sometimes-blue lips. I cut myself off and spent most of my time alone.
One day I was scrolling Instagram and I saw a post about autoimmune diseases and invisible chronic illness. I soon discovered a community full of people with shared experiences. I had been faltering, trying to cope with my disability, and this shared experience, even through a screen, was a lifeline that I could cling to. There were people who shared my struggle! I wasn’t alone! I recommend surrounding yourself with people who understand, or better yet, people with lived experience of your disability.
Inquire about support groups in your area or follow individuals with your shared experience on social media. And if there is no one you can talk to, journaling or therapy may be able to help you process the tough emotions living with any disability brings. Humour is something else I use to help me cope with my experience. I figure you can laugh or cry about it. Sometimes you might need both, but I’d prefer to laugh.
”Starting Spreading the News…”
My advice is talk about it. Whether this is a new thing or something that you have been living with since birth, there is still the process of coming to terms of how this disability impacts your life. I’m not saying that you must share your own experience. You do not owe anyone an explanation, nor do you exist to inspire others. If your disability is invisible, you have the privilege to hide it from others. That being said, there are supports that can make your life with a disability easier.
Even if you choose not to share about your experience, disability awareness is still incredibly important. Disability comes in all forms, and it exists even when it doesn’t ‘look’ like we think it should. I began to advocate for disability awareness in my own small sphere of influence. I started an Instagram page, @exhaustedbyliving, to share my struggle and let others like me know they weren’t alone. I also advocate for disability awareness through posts on my private Instagram and Facebook pages.
Society tells us that being disabled is wrong, and there is a shame associated with that. Together we have the power to change the rhetoric. If we talk about disability, we are letting others know that it is ‘normal’ and meant to be celebrated rather than covered up. Together we can work toward ending the stigma associated with disability.
About the Author
In 2019 Kathryn D was diagnosed with an autoimmune disease. One morning she woke up and couldn’t get out of bed, going from non-disabled to disabled overnight. Through her diagnosis, she strives to help others who are trying to cope with a disability that most people can't see or understand, including health professionals and loved ones. This is a battle, and she believes no one should fight alone. Among other things she loves going on adventures, enjoying good food, and reading.
Explore Possible
This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.
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