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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Carrie Kellenberger says
I've just read this again and wanted to reiterate how on the spot it is. I'm going through the same thing again with my medical team. They believe me but they need visual proof of my invisible illness to petition for me. It never ends!
It really is jaw-dropping that doctors need visual 'proof. I truly don't understand how they are approaching your care in this way Carrie. I'm so sorry you are going through this.
Lee Good says
This is a thought provoking article. Only last week I had a specialist who did not take me seriously, did not treat my new symptoms or offer any suggestions. As a 'senior' and someone living with chronic illnesses for over 20 years I found it quite disconcerting to be spoken to in such a condescending way as if I was an anxious young child. I love your description of shouting into the void as that's just how I felt after visiting this specialist... no one was listening. There certainly are many challenges when living with illness. I am so happy we have an online community as understanding from others is so important. PS Thanks for linking up at Fibro Friday with this great post.
I'm sorry you had that experience, it seems as if most of us have been talked down to or patronised. It's so upsetting when it happens. And yes, love the online community we have here, so lovely to be a part of it. Thanks for reading!
Sheryl Chan says
Great post thanks for sharing your perspective too. I wrote a similar one years ago with photos and Google marked it as 'shocking' content so no ads are served on that page haha. Geez.
I love your sense of humour btw. yes it can include bad forgetfulness can't it?!
Btw I linked it up to that post on my blog here 🙂 https://www.achronicvoice.com/2017/05/15/body-gone-rogue/
What?! How is it shocking to show what illness can do to the body? Jeez, so bizarre - and ironically, tries to make us even more invisible by attempting to censor content . . .
Carrie Kellenberger says
Great article, Claire! That's so interesting to read about your doctor's reactions to your appearance. You'd think they would know better than anyone. That said, even if I could do my hair or makeup before I go to the hospital, I never bother with it. I need my team to see how my skin looks that day. When I'm flaring, my face is chalky white and I get very pale. I don't cover up the rashes on my chest or arms either because he needs to see how those change - sometimes it's a MCAS reaction or sometimes it's related to something else, plus I also need him to see the injection site reactions which are getting worse with each year. It's sad that so many people still don't get it despite the visible signs. My husband often says he can tell just by looking at my eyes if I'm worse on any given day, so your friend is right to notice your eyeliner. Sounds like a good friend!
Claire, you really hit the nail on the heaed with this post. Too many people think 'looking ok' is the same as BEING okay and it definitely isn't.
I utterly understand that 'see, it's real' feeling too. My FND movement symptoms are often super obvious, but are movements that could be intentional. So, when I have minor symptoms, people misinterpret it as anxiety of something similar(jiggling my leg or things like that), but when they get more severe, too many people jump to conclusions and assume that I'm having a seizure or similar. The worst for me is that very often I'll end up mirroring something I see and I'm always afraid somebody is going to think Im mocking them. By mirroring I mean I'll see a kid rocking back and forth and start doing the same - or worse, if I see somebody limping or having an otherwise akward gait, sometimes I'll match their symptoms for a few steps.
Since I look fine the rest of the time, people do forget or assume that I'm fine - which makes my symptoms even more shocking to them when they occur.
I think the biggest issue for me is that I don't drive, and people question that, until I explain that FND is stress-responsive and driving here in NJ is stressful - then they see a bad symptom and agree that driving doesn't seem like such a great idea.
Anyway - I really loved your post and it's so true - too many people don't get it and don't want to be bothered to try. Personally, I've worked to remove those people from my life if I can, and minimize contact if I can't. I've built up a good collection of folks who do get it, many of whom have chronic conditions themselves!
Shruti Chopra says
I remember once I was told that if I'd like my endo to be taken seriously and get an earlier appointment with the gynaecologist (NHS hospital), I need to be more dramatic and even go into A&E! All this just so that my invisible illness appears more visible! And yep, somehow that taught me to not look neat to a doctor's appointment so that I am also heard better.
It's crazy how that is and I love how you've brought that up, especially when you say, "Living with invisible illness is often about living with forgetfulness. Not my own,.." - made me laugh at the irony that we're the forgetful ones yet it's the others who seem to go through brain fade but then I think everyone is so in their own world that I doubt they're mindful enough to understand what's going on.
Also now when I am visibly disabled, the line I get is "aren't you better yet?!"
Sometimes I think it's a no-win situation.
Why am I not surprised that you have been told that about being dramatic?! Invisible illness really does take a lot of work when it comes to getting a doctor to really listen doesn't it. And yes about others having brain fade!! Do they not get the 'chronic' aspect of chronic illness . . .
Patty Bliss says
I learned early in life through my mother's experiences and then my own, that many well meaning people including family and the medical community have difficulties comprehending unseen illness's. That doubt causes us to unfairly question ourselves.
Thankfully there are people like you who have the courage to share their experiences, it helps others like myself not to feel as alone and frustrated.
Thank you for being strong!
Hi Patty, I agree. It is definitely hard for people to understand isn't it. I guess we all have to keep up trying to spread awareness and educating people. Thanks so much, and take care.