Living with invisible illness often feels like shouting loudly into a void. Why? Because the invisibility of our conditions can lead to doubt being cast over whether we really are sick. Sometimes we even get sly allegations that perhaps we are faking, as though we have carefully crafted our lives into a giant ruse to trick everyone into giving us sympathy (or drugs, if they are a doctor) . . .
I've had dozens of conversations on this topic with friends on my Instagram and online. Most, like myself, prefer the anonymity of invisible illness and do find a sense of relief in being able to blend into the crowd without our conditions being 'on display'. Yet that doesn't means that living with invisible illness isn't without its challenges, as I talk about in this post.
Oh, I forgot . . .
Living with invisible illness is often about living with forgetfulness. Not my own, although brain fog is an issue at times . . . No I mean the forgetfulness of others that I really (still) do have chronic illness conditions. Personally, amongst my long list, are fibromyalgia, vestibular migraine, interstitial cystitis and dysautonomia. All entirely invisible to everyone. Sit next to me on a train or spy me on my laptop in a coffee shop and you will be none the wiser. Although you may notice I visit the bathroom a lot, because my bladder is jumpier than an over-excited puppy.
The forgetfulness of others means that I have to remind them of my own limitations often. That a long walk may not be an option, that I can't eat certain food or that no, going to a 3D cinema isn't a fun activity, because flashing lights and digital rocks flying at my head will lead to profound dizzy spells when my migraine brain becomes angry and upset.
And sometimes, when I do point out that yes, I do STILL have migraine despite it not being obvious, I can get a bit of frustration. I've had experiences when a person has got huffy with me that they have forgotten about my conditions, as though I am inconveniencing them that they have to remember. It takes a lot not to get angry and upset that nine years on I am still having to point out that I'm definitely not cured.
But your hair looks nice!
Years ago I had an appointment with a doctor about a condition that at the time prevented me from working or having much time out the house. As is my way, I wore smart clothes to the appointment, did some make-up and had freshly washed hair. The latter, it seems, was a mistake.
The doctor asked the right questions, expressed concern that treatments weren't helping and considered new options. All was going well until the end of the appointment when she brightly asked me again whether things were any better. When I said no, she replied with 'well you look well, your hair looks nice!'. Hundreds of thoughts zipped through my mind. What did my hair have to do with dizziness? Should I educate her on why the comment was inappropriate? I was so confused I just said 'um thanks' and left. Perhaps next time I will be more brave and address it.
Should I look scruffy to prove my status of 'sick'? How does 'smart' equate to being well?
Perhaps the most difficult bit of living with invisible illness is the pushback we get from doctors. Invisible illness, particularly conditions that don't have a medical test to 'prove' you have them, are routinely ignored or downplayed by some in the medical profession. Women in particular overwhelmingly seem to have experiences of being told their conditions are 'just anxiety', or 'in their heads'. Perhaps, it is suggested to them, they should do more yoga or try meditation? Some are cast as drug seekers, with allegations they are exaggerating symptoms to get their hands on drugs. Do we want drugs? Well yes, if a drug existed to help manage our very real symptoms.
But I do look sick, if you look hard enough
I've thought a lot about my invisible illnesses over the years, and how they are visible to those who know me well. The most poignant moment may seem silly, but showed such care. I met a friend for a coffee and he asked how I was. I said fine, and he looked at me and said 'no you're not. You're wearing lots of make-up. I know when you do eyeliner that you feel particularly bad'. It seems my attempts to cover-up were actually a big sign to those who care the most that all wasn't well.
Make-up aside, my body does give off hints of my conditions. It turns my invisible illnesses into visible ones if you look hard enough. I always look as though I have two black eyes, such are the circles under my eyes from fatigue. I walk slowly at times, given that fibromyalgia causes my hip to hurt relentlessly. And my fingers are often blue due to Raynaud's syndrome. Illness is written all over my body. You just have to look hard enough to see it.
And when visible symptoms bring a sense of relief
It's disconcerting when my MCAS plays up to become visible flushing on my face. My first reaction is fear, as it means a reaction worse than the usual burning and itching I get multiple times a day. When the rosy cheeks arise medications are taken, cold compresses used and I've even been known to hang my head out the window in mid-February when snow covers the ground to try and cool my face down.
My other reaction is a weird sense of relief. I know that sounds strange. But when you live with a condition that doesn't have obvious symptoms, it can feel gratifying in a way to show others and say 'see, look, it's real'. And, simultaneously, in my head say 'see, I'm not faking, or attention-seeking. I'm sick. Really sick'. Sadly, it's on those occasions that great empathy (or sympathy?) is given. Because visibility often does lead to greater kindness and understanding. And perhaps that is why some days I wish my invisible conditions really were visible.
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