‘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.
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.
Speaking as someone who has PPMS, I don’t actually care what the first two letters are to describe my illness. All that matters is that WE have MS and the best way to get through it is if WE stick together.
I can only imagine she was recently diagnosed and was still in the angry stage, or she was just a annoying pillock who should be ignored and forgotten
And I never think of myself as going downhill I prefer that I mature at a faster rate 🙂
What a brilliant comment. I too think that we all have MS, who cares about the letters? And yes, we really should stick together. If we ‘fight’ between ourselves or compete to find out who has the ‘worst’ MS, then we’re a lost cause.
And I think she was just your latter option – an annoying pillock, lol. How to make friends and influence people, eh??
Blimey, not nice 🙁
MS is MS, yes RR has disease modifying treatment but that doesn’t make it alright does it? Are we supposed to feel guilty for accepting injections and intravenous treatment? Erm no and I never will. I will grasp at my 30% with all my might.
I feel angry for you. No one has the right to make someone feel so deflated in a place that should have been supportive, we are all in the same damn boat.
You make me feel good every other day with your blog, I just wished I could do something for you!
Perhaps a hug that you should have had at the meeting?
Aww, thanks Sam!
It’s odd, isn’t it? Have never really come across the MS one-upmanship before and it wasn’t nice. As you say, we’re all in it together, come hell or high water. And it was horrible to be made to feel so guilty.
And thank you SO much for your lovely compliment – really has set me up for the day.
interesting – as i’ve commented on here before, when i was first diagnosed my neuro told me to stay away from my local MS meet up “unless i wanted to get really depressed”.
i’ve been to a few good meetings where some of the newly diagnosed older people were surprised by how many ‘youngsters’ were there but they were really nice. by the same token i’ve been to meetings where younger MSers have really wound me up by just moaning about their lives.
it’s like music – just cos someone has the same taste as you, it doesn’t mean you’re going to be best mates. and just cos someone has got MS (of any kind) doesn’t mean you have to like them.
i don’t know where i’m going with this but the medical one-upmanship, “my-MS-is-much-worse-than-yours” isn’t doing anything for the ’cause’ – whatever happened to SOLIDARITY, man?
anyway i’ll stop wittering now – people are weird all over, regardless of any other ‘issues’ they might have!
Very good advice, lol. Solidarity somewhat lacking at times, methinks. A few of my MS friends have been told the same thing, and I can see their point. I did walk out of my first ever support group meeting for that reason.
I hate the one-upmanship. But the problem obviously lies with that particular person (hopefully), and by all accounts, she’s not popular, lol. I am certainly not getting into a ‘compare-the-symptom’ game. Aren’t we all in this TOGETHER for a reason??
Has it really come down to ‘my MS is worse than your MS’ like ‘My Dad’s better than your Dad’!?!?! What a numpty! Maybe if she showed a little support to people she wouldn’t feel quite so bitter and angry about those people doing well.
‘But you look so well’ is probably one of my pet hates when I tell anyone I have MS. Oh well, next time I must have the courtesy to ensure my limp and speech are all messed up at the same time so there is no doubt people know what’s up with me! If that person had caught me on the wrong day I’d have probably have said ‘No, I don’t have MS. I just come to these meetings for the fun of it but thanks for asking [you fool]!!’
I remember being at a shopping centre and there were a group of women raising money for the MS society. I was with my cousin and her husband (who also has MS BUT is in a wheelchair) – the woman was talking to us all and was speaking to my cousin’s husband about his MS. She asked my cousin about her thoughts on the changes happening to him and how she felt about it all. At which point she said, ‘Well, my cousin [points to me] has had it for a while and so I had someone to talk things through with when we were mid-diagnosis’…. Well let me tell you, the look I got was frightening and then the old ‘but you look so well’ comment made its dreaded appearance!!!!!!!
Yup, it’s a game of ner ner ner ner ner (or something). Very playground, very childish. And hurtful.
‘But You Look So Well’ – a phrase I have come to loathe with a passion. Maybe we should start a range of t-shirts – yes, I know I look well,ta! It sets my teeth on edge. Damned if you do and damned if you don’t.
p.s. I actually saw the person in question today……and that’s another story….
Well I wish I could say something to help cos I feel really angry on your behalf! I know people mean well but it’s so frustrating when they say how well you look, I get it a lot. Yes I’m doing well, feeling great and going out doing normal stuff but you can’t see my pins & needles that pop up randomly, or my dizziness or the buzz I sometimes get when I get up from my desk! And as for the “one upmanship” that’s just ridiculous, nobody asks for ms and nobody gets to choose what type they have. I realise we’re lucky to have access to dmds but again that’s not our fault so we should not feel guilty but sometimes we do!
I was also told to avoid the ms centre (by my nurse) as its mainly older people who are not so “well”. I’m not sure how I feel about that, having been diagnosed 8 months ago its scarey to see what ms can do to some people. But I’m slowly learning how different it is for everyone.
That’s why I love reading your blog (and others) as its such a good way of connecting and knowing we’re not alone.
Thank you so much Jenny!
So funny that a lot of us have been told to avoid ‘time-served’ MSers. What are we teaching the next generation?
I look well. Well, hey, I’ve tried hard to get out that morning, lol. I SHOULD look good!!!
We are all different, yet we all have MS. We should look for other things, rather than who has the worst MS. It’s depressing enough as it is, surely?
It’s hard for newly-diagnosed people like you and me, when we go to a group full of older people, so I think all age groups could be made to feel welcome!
On the subject of one-upmanship, I remember hearing on In Touch, (a radio programme highlighting issues among the visually impaired), about O-U displayed by some V-I individuals. The people born blind were at the apex, next in the pecking order’ were those who become blind in later life; partially -sighted people were ‘at the bottom’. I was incredulous, but after your experience, less so.
Just to be contentious though, while it’s hardly a laugh a minute to have RRMS, there are treatments however imperfect. As far as I’m aware, although there is no doubt ongoing research, this is not the case with PPMS, so give the woman* a break!
*PS- no relation, no inducements
I love a bit of contentiousness! You are right and it is ‘unfair’ there aren’t as many treatment options. Perhaps her bitterness about this overtook her manners and that is completely understandable. Maybe I would feel the same in her situation.
My mum remembers having the same kind of one-upmanship when she was learning sign language. There was a definite hierarchy – those born deaf, all the way down in varying degrees.
Maybe we all feel we need to ‘slot in’ somewhere, whatever the illness? Is it just about finding our natural place in the scheme of things??
How rude and upsetting! As I’m a bit late to the party (see my email for details on the massive bout of laziness that has beset me), I don’t have anything wise to add that others before me haven’t said. But: hrumph! Cow.
We *are* all in it together. Some people just are unpleasant.
You’re excused your bout of laziness – I may just have well coming up soon, lol!
I was thinking the other day (dangerous, I know), and yes, I wonder if we are made to feel guilty in a way that anyone with MS is untouchable. We mustn’t say anything nasty about them as they have MS? Something I haven’t really thought about before. And you are right, MS or no MS, this particular individual was just plain rude. We are not saints just because we have MS, ho hum!