Tag Archives: but you look so well

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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But You Look So Well…

hunchbackFive words guaranteed to raise the blood pressure of us ‘invisible’ MSers, ‘but you look so well’ is normally accompanied by a sharply raised eyebrow and a sceptical look. Obviously I’ve been making the whole sorry saga up and have accepted help and sympathy under false pretenses.

The meaning behind these words is stark. You said you were ill, but you’re clearly not. Go away, you attention-seeking drama queen.

I get asked to explain my symptoms. Dodgy balance, extreme fatigue, wonky hands, difficulty walking in a straight line, falling over. They nod then say, ‘well, at least it’s not cancer, eh, bet you’re glad it’s nothing more serious?’  Would it be ok to beat them about the head with my walking stick?  It’s got to be useful for something. There is an illness hierarchy and MS languishes somewhere near the bottom.

Sure, on the surface I do look fine, and since being diagnosed with MS, it’s important to me to still look my best. Adapting to the role of a ‘sick person’ has been a difficult transition and one I am still going through. Yet, for society to regard you as an ill person or a person with a disability, you need to conform to their expectations, otherwise you can just whistle for support.

I should stop washing, start wearing baggy-kneed leggings bought in bulk from Primark, rub chip-fat into my hair and under no circumstances dare to put even the merest hint of make-up on. I must give up work, apply to go on the Jeremy Kyle show and start hanging out in Poundland, spending my benefits on cheap junk food.

A well-meaning friend joked that MS fatigue is a pretty cushy symptom. You get to doss around on the sofa all day, doing nothing more taxing than changing the telly channel. What they don’t see is the fear, the anxiety and the utter terror of an uncertain future. MS is sneaky. It’s symptoms can strike at any time and there’s no set pattern. You can be chatting away in Starbucks, feeling quite normal, enjoying your latte when suddenly the cup drops from your hand. Or you can be walking along the street when your foot just drops from under you. Socially, MS is dire. It steals your confidence.

So if you see a person with MS looking well, just think of the effort they’ve made despite everything. And don’t mention the Poundland carrier bag full of Frey Bentos pies and Bacon Bite crisps…

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