As you may be aware, I suffer from Chronic Fatigue Syndrome/ME and Irritable Bowel Syndrome. These are “invisible illnesses” – the symptoms aren’t visible to you. I don’t have a missing arm, I don’t have lesions all over my face, and to look at me you’d probably think I’m just really hung-over.
I’d gotten used to people not seeing that I was ill, gotten used to the disbelief and outright rudeness from others, gotten used to having to explain my illnesses to people through either necessity, or in response to questions asked. It’s a trust thing – if you can’t see it, how do you know it’s really there? There’s that niggle (or with some people, a shout) in the back of the head that says “it may not be real, they might be after attention/benefits/whatever”. I’ve seen it, heard it, dealt with it…
…that is until recently. Back in April a small cut in my right hand became infected. No biggy, see the doc, get some steroid cream and anti-biotics and that will clear right up, right? Wrong. The infection cleared up lovely – my skin did not. An itchy, horrendous, rash began to spread across the hand and up my fingers, at first sparing my fingertips. Then it started on my other hand, and also my feet. Now, when I say itchy, I’m not afraid to admit that I’ve suffered from a fungal infection or two in the past, I’ve fallen half-naked into a nettle-bush and once spent nearly 6months with my leg in plaster – I thought I knew what an extreme itch was. I knew nothing. This was an itch beyond all comprehension – an itch that literally made my hand numb for all sensation except for the itch. It blistered all over, it dried up, the skin cracked, then as it was starting to heal the blisters and itch would come back, starting it all over again.
As a result, my hands now often look like this despite being under consultant-dermatologist care, using antihistamines, steroid creams and gallons of moisturiser.
But something else showed up, something far more interesting – understanding, empathy, well-wishes, consideration. I’m not used to that, I’m used to being made to feel like I’m a shirker despite actually being really ill. People can see this. It frightens them. It makes them withdraw while inhaling sharply before saying “ow”, or “that must really hurt”. They empathise, considering how it must feel to have these hands. People open doors for me. People write for me (better than get blood and gunk on their pens I suppose)!
I’ve had to keep them covered for a while, can’t touch things without the gloves, and they themselves cause their own set of reactions. Bear in mind that I generally wear dark colours – a black hat, black shirt and the only bit of colour on me is my blue jeans; but now I have bright white gloves completing my ensemble, a glaring contrast of white on black.
One little girl asked if I was a magician. I get constant references to Michael Jackson! A group of adults I overheard were saying “check him out in the hat and gloves!”, “yeah, something SERIOUSLY wrong with him!”. I had one 12yo girl snidely comment “ooo, nice gloves!”, so I pulled it off, held up my hand and asked “is that better?”. She literally screamed (not an exaggeration), backed off and pretty much begged me to put it on. Despite it reducing me to a figure of horror and revulsion, I must admit feeling a momentary victory over snotty-commentary with that and went off smiling.
So three reactions to three visibilities of illness. Invisible illness invites, maybe even causes, suspicion and derision, denial and confrontation, dismissal and depression. Visible illness elicits sympathy and understanding, empathy and compassion, revulsion and warm-wishes. Covered visible illness seems to call forth questions, inquiry and even open mockery.
Since April I’ve had more good-wishes, acceptance and plain-old understanding than I’ve had in all the years I’ve had CFS/ME or IBS. Now while I’m not seeking sympathy for my conditions, it’s nice when people at least understand them or take them into consideration when dealing with the consequences of the symptoms (be it me being grumpy, or unreliable, or forgetful, or confused, or easily stressed).
One thing, seeing all three reactions to these three states of illness has been very eye-opening. It’s shown just how people would react were my invisible illnesses visible. Not all of these reactions are good, but at least they’re there. Even a negative reaction confirms acceptance that there is a condition present – something I’m simply not used to.
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