This is how I appear to the world. I look disgustingly healthy and not in bad nick for someone who will turn 47 this year! In some ways I can understand those who think I am somehow exaggerating my illnesses and there can’t possibly be that much wrong with me. I’m sure I’d think the same thing if I were them. Imagine what healthy people think when someone who looks like this parks in a disabled bay, then gets out of the car and walks to the shop!
This is the face I choose to show the world and I do so to appear ‘normal’. To fit in. To not have people pity me. To have them talk to me about subjects other than my health and to treat me like the interesting human being I am, not the depressed victim they think I should be.
There are some people who are genuinely pleased to see me out and about, and there are those who think I should stay in bed and be sick 24/7, especially as I’m claiming disability benefits which their taxes are paying for. The wearing of make-up (I obviously have enough energy to put my face on then), having a tan (which means I’ve been lounging about in the sun while they’re working hard to keep me) or buying fashionable clothes (where are you getting the money to pay for them?) are frowned upon.
Here are some of the comments which have been made to me over the years:
- “I wish I looked that good when I was ill”. I think this is meant as a compliment, but it somehow implies that I’m faking being sick.
- “I was obviously born in the wrong century – some of us have to work for a living”. This was levelled at me by my neighbour, a hard working farmer’s wife, as I lay on my sunbed (I was too weak to sit upright) under a parasol one afternoon listening to a talking book on my ipod. It must look like my life is one long holiday, when in reality it was the first time I’d set foot out of the house for 3 days due to a horrendous migraine session. I need Vitamin D and fresh air just like everybody else. I did say to her “I’ll swap you my bad health for your husband, children and holiday home in The Canary Islands” but it didn’t really cut much ice.
- And my all time favourite: “it’s nice to see you out, you must be feeling better”. What do you say to this?!
The day the above picture was taken I was having a ‘good’ day (I use the term relatively lest you think I mean I felt well). Trouble is I can’t keep up the pretence for long, so after a couple of hours I’ll be found wilting in a corner and making my excuses (the dog needs feeding, Hugh Jackman promised he’d ring) and slinking off home so that I can crawl back into bed to finally let the exhaustion take hold and the pain hang out.
This is the face I don’t show to the world. When I’m ill people don’t stop by to visit (not that I could cope with company even if they did), so no-one gets to see the reality of my day to day existence.
Here I’m having a migrainey day, hence the gel strip on my forehead and ice pack on my head. My back is painful and helped by my TENS machine (the little box on the left with the wires poking out). I feel sick to my stomach and am clutching my trusty hot water bottle. I went over on my ankle the week before so that’s still strapped up, and my tendonitis is playing up on my right arm hence the elbow and wrist supports.
When I think logically about it, what would any visitor say to me in this state anyway?
“Hope you feel better soon” doesn’t really work when you’ve been sick for 20 odd years with an incurable disease.
“Having a bad day?” No shit Sherlock.
“Is there anything I can get you?” Apart from a new body and a digestive system that actually works? Not really, thanks for asking.
I get quite grumpy when I’m in this much pain, so probably best to leave me the hell alone (which would be great if only being left alone wasn’t so goddamn isolating and lonely!). Honestly I’d kill for someone to lie down next to me and cuddle me, or to stroke my head or rub my back. Dream on.
Like many chronically ill people I’m constantly torn between wanting to appear normal and be treated just like everyone else, to wanting my pain and suffering to be acknowledged and not ignored and dismissed. I like it when people say I look well especially when I’ve made a monumental effort to look nice, while at the same time I’m resentful of the compliment as I feel so horribly ill standing there chatting and trying my best not to keel over. If even I can’t decide how I wish to be treated it’s a bit unfair to expect those around me to know what to do and say for the best. I don’t have any answers and it’s a dilemma I’ve struggled with and still not reached conclusion on.