Sunday 16 September 2012

(In)visible illness

So it's the very last day of Invisible Illness Awareness week. Nothing like leaving things until the last minute =]

I wanted to share with you a witty yet moving account of my experiences with visible and invisible illness, but last night's bout of painsomnia probably put pay to that. Suffice it to say, if what follows is actually understandable English (or really any language of any kind) we're chalking it up to a win, mmmk?

On the face of things I might not seem to have a lot to say on the subject of invisible illness, what with the wheelchair being a bit of a giveaway and everything, but it turns out I have a thought or two squirelled away for a rainy day.

Firstly, I (as with many others whose impairments/illnesses are now visible) lived with invisible illness for many years - in my case 10 years of invisible illness that had a significant impact on my day-to-day life (plus minor chronic health issues since the word 'go').

My invisible health conditions morphed over the years from fatigue + depression, to fatigue + fainting + joint pain / instability and as gradually more splints, meds and mobility aids came into the picture it all became more and more visible.

My second point is that although as a wheelchair user I am obviously disabled, I still consider myself to be living with invisible illness.

Part of this is because of the assumptions that people make about why people (especially young people) use wheelchairs. I get a lot of 'what happened to your legs?' or 'when was your accident'. People see me using my wheelchair and I assume that I can't walk - to the point of someone passing comment when I stand up at least once a day.

True, part of the reason I use my chair is because I can't walk very far at all, and because it is a wobbly and precarious experience - but I don't only use the chair because of my mobility.

I also use my wheelchair because of the pain that walking causes me, because of the dizziness and fatigue that standing causes, because of the poor muscle tone that makes sitting in other chairs without postural support absolutely exhausting. People don't see that when they look at me. Nor do they see the brainfog, nausea, insomnia, heat intolerance etc.

Also, when I'm not using my wheelchair (or my assortment of splints, sticks or monitors) I don't look visibly ill as long as I'm sitting or lying down. Unless you know what to look for that is (purple feet, strange contortions and transparent skin being some of my telltale signs to those in the know). In this way my illnesses are relatively invisible compared to someone living with a condition such as Down's Syndrome that can be fairly recognisable to the general public.

In some ways these distinctions don't really matter. There are comparative advantages and challenges to both invisible and visible illness/impairment. Chances are that most people you know will at some point have an invisible health condition - high blood pressure, depression, MS, endometriosis (yay! I can still remember 4 whole conditions after my year out) - you would think this would mean that we'd be better at expecting this.

Better at planning events to be intrinsically accessible rather than bolting access on at the end (and remembering that access =/= wheelchair accessible, even if there were such a thing as generically accessible to all wheelchair users). Better at asking people how they're doing and really taking the time to listen. Better at checking in with folks who've dropped off the radar and continuing to visit a sick friend in the hospital when they're still there 3 months after they were admitted. And, for what it's worth, better at talking about health, illness and disability without staring, pointing or asking 'what happened to your legs?'.
Chronic illness can be really isolating and complicated. When I was first ill, a lot of people didn't know and a lot of those who did found it awkward / difficult to talk about my mental health problems. That stigma made it hard for me to be open about my experiences. These days I think that my wheelchair sometimes creates a visible barrier between me and other young people who are not disabled. It is a constant reminder to them that my life is different to their experiences I think. I am very lucky to have a few close friends who know and care about all the health nonsense that's going on. They mostly have health issues of their own so we have a shorthand to a certain extent.

It's a strange thing, visible invisibility. Especially for those of us with rare diseases that most doctors couldn't spot. I was just wondering, really, if anyone else feels the same way?


  1. Great article: thanks Flo. %)

    I have fluctuating conditions - tho' not rare (see Twitter profile). Sometimes I use a wheel-chair, sometimes a scooter, sometimes I walk.

    My local corner shop is quite literally a Waitrose supermarket. The staff are fabulous. Many of them stop me for a chat or I them. They encourage me when I am being and able to be independent and helpful when I cannot. I live in a very community-minded neighbourhood in leafy suburbs of south M/cr. I experience the same attitudes here. When I go into Hale - not my nearest town, but it's flat so easier for me to navigate - again I am treated with respect by the shopkeepers/assistants whatever my condition.

    I tend to only have problems with folk I do not see so often or acquaintances. I occasionally suffer abuse on my scooter when passing a local FE College or when travelling on the pavement at the side of a busy main road. I'm young(-ish!) and in a scooter without looking particularly disabled. It's unnerving, but generally I shrug it off.

    Intolerance methinks is a failure of education (whether formal or informal; by others or oneself). As I understand it, the vast majority of maladies (not just disabilities) are invisible. I read this in a recent article. I had not thought of health/disability like that before. I think the Media could do far more to raise awareness.


  2. I have had similar experiences with visible/invisible disability. For most of my life I wore my prosthetic leg with crutches. Most of the time people would assume I'd broken my leg. They ask "what happened to you then?" their smiling faces, joyfully expecting an amusing story about how I broke my leg. I tell them I lost my leg; their faces drop into awkward embarrassment. It's funny but annoying to deal with all the same time.

    About a year ago I got drunk and fell over. I broke the femur in my stump while I was wearing the prosthesis. I wasn't able to wear my prosthetic because my stump had swollen up. That meant I had to walk around in public on one leg. I was dreading it, but it's actually quite liberating. Now I have an amusing story about how I broke my leg, but no one never asks! because they can clearly see I lost my leg.