Adapting to the role of an ill person is not easy. Society makes it very clear – if you are sick, you must want to get better and you must co-operate with the medical establishment.
In return, society will ‘allow’ you to shed normal responsibilities of work and household tasks for a limited time, until you are better. You are recognised as being in need of care and unable to get better by yourself.
This theory was first developed by Talcott Parsons in 1951, and despite its shortcomings, still holds firm in most peoples minds. But what happens if you have MS, your illness fluctuates and often you are well enough to participate fully in society? Where do you stand then?
MS can mark you out as a fraud. Some things said to me over the last two years:
- ‘But you look so well.’
- ‘When are you giving up work?’
- ‘Wow, you’re drinking alcohol.’
- ‘I thought you were ill.’
- ‘Why are you so tired, you were fine yesterday?’
Living as a fairly young person, with a fairly invisible illness renders you an uncomfortable anomaly. I have no standard ‘markers’ of a sick person, no visual clues. People just have to take my word for it, and this is where the tension arises.
I am in a no-man’s land between being well and being ill. I still want the ‘privileges’ that being well and a productive member of society brings – a job, a social life, status, etc. Yet I also need the exemption when I am ill, the extra support and help and many people, and society, would much prefer it if I chose one scenario and stuck to it. I can either be fully productive and keep quiet, or give in and take up the sick role full time.
Other people with MS can be just as judgmental. I once went to an MS support group and felt very out of place and unwelcome. Finally, the organiser took me to one side and gently explained that I made the others uncomfortable. I was talking about work and going out for a meal that evening. He said that this group meeting was often the only outing they had in two weeks. I wasn’t ‘sick’ enough to join their group. I never went back.
What’s the solution? I have no idea…..
What a horrible experience at a “support” group! But you’re so right: it’s a very strange line we with MS walk. I wish I knew the solution. I was very fortunate, before the U.S. government began cancelling contracts left and right (including mine), to have a boss who was extremely understanding about my illness. I will be forever grateful that he was so accommodating in terms of appointments, needing a break, mental fog, etc. On my part, I made sure to give work my all when I was able to do so. That helped, I’m sure (plus, there were a few exceptionally crappy employees, so perhaps overall I was still a better performer than some!).
Is there more than one support group in your area? I have been to only one such meeting, but there were enough people in attendance who appeared to be in various stages of the illness (some invisible, others in wheelchairs) that I felt quite comfortable with my largely invisible state. The people were quite nice. So perhaps you just went to a bum group?
Hi there,
Luckily, there’s a lot of other groups and stuff where I live, so I guess there’s a niche for everyone, but you still feel awkward, neither fitting here or there. It’s strange. Luckily I now have a very understanding employer. Maybe it helps that he’s my friend, but he’s definitely good as gold and knows exactly what comes with MS.
X
Hi, Great post , I’ve heard many of those same things but the one that gets me the most P/O’ed is the oh he’s drunk or just hearing people who think they’re whispering saying that oh he’s an alcoholic . One morning , several yrs back I was walking home from the pharmacy , it was about 8:15am , it was a bad morning for me so I was weaving alot, I guess and when I was crossing the street ,( in a cross walk ) I was actually stopped by a cop who insisted that I had to be drunk , and of course I was also slurring a bit so there was no way he was going to believe me when I tried to explain that I had MS. It got to the point that he wanted me to do a field sobriety test ( Lol, like that was going to happen , even on a good day I couldn’t pass one of those )so he actually arrested me for public intoxication , at the station I passed the breathalyzer (of course) ,but it took my dad coming to get me to convince that idiot that I really did have MS and I wasn’t drunk or on any kind of illegal drugs!!! It was horrible and of course the more I tried to get my point across the more stressed I got and the worse it made me look . But I did get an apology in writing from the officer and the chief .Not that it made me feel any better at the time , but I have since become much more tolerant of people’s ignorance , and I wear a medic alert necklace that says what I have and I always wear my orange MS society bracelet , not real sure either thing would do me a whole lot of good , I’ve never had that problem again since that time ( THANK GOD ) !!! And I also wanted to say I hope school is going good (I’m sure your doing great ) & I miss the daily blogs , but I also don’t blame you for cutting back , sounds like you have a pretty full plat … . Well have a great weekend and take care . <3 🙂
Hi Scot,
Hope you’re well.
I read your comment out to my mum, and she said a similar thing happened to my dad when his MS was quite bad. There were reports of a drunken paedophile in the local park and he was questioned as he always walked/weaved through the park with the dog. Poor thing.
We certainly do have a lot to put up with!
X
Hi there,
Concurring with Scot, I also miss your daily blogs, while completely understanding the reasons to cut back and wish you all the best with your course work.
I seem to remember a website called http://www.butyoulooksowell.com set up by some people with MS in the States, tired of the gratuitously insulting phrases cast their way. Subtext: “You’ve allegedly been ill, but have the audacity not only to look well, but also better than me. MS? Schem Mess! Huh!”. But I can’t find the website today, so maybe it never existed and was another out of mind experience that I can blame on the drugs. Yes, the drugs taken for the invisible symptoms of my imaginary disease, aka MS.
The other response, which you’ve touched on in a previous blog, is the drum roll of People With MS They Have Known, 95% of whom are dying or dead, 100% with unspeakably depressing symptoms. All are/were Brave. Subtext: they are people with Real MS, not like you. Judging from these unsolicited tales of woe, the number of (100,000) individuals in the UK with MS, is a gross underestimate.
Without wishing to be flippant or insensitive, do these people think before this comes out of their mouths? Would the same people even think of telling say, an expectant mother all the possible complications of pregnancy? Mmmm, thought not. How about people with big BMIs? Oh yes, my brother-in-law/auntie/neighbour’s -fifth- cousin -twice -removed was overweight too, and had a heart attack, diabetes and a leg off. Anyone?
The most offensive comments I’ve received so far are:
1. Everything happens for a reason.
2. Perhaps you’re being tested.
3. You can fight this.
Don’t get me started.
So what’s so special about (RR)MS? Why is there no recognition of its seriousness and effect on our lives by Joe/Joanna Public? Well, I guess because it’s largely hidden, especially if, like me, the symptoms are mainly sensory. You can’t see pain, numbness or pins and needles. And no, there is no comparison to lying on your funny bone. Yes ok, unsteadiness and a limp, but many of these conversations take place when both parties are stationary! Next time, must remember to talk about my bladder and bowels. Also since most people are hit at a youngish age, there’s a real tendency to try and behave as ‘normally’ as possible. I do this! Plus the symptoms fluctuate- today speech and swallowing are ok and have been for a few weeks. Tomorrow, who knows? Note to self: wait till these play up before embarking on conversations; splutter over lunch.
Just to be clear, I’m not looking for a sympathy vote. I’m not a victim or survivor. I’m an individual with MS and just because I don’t happen to fit into the stereotype that you feeI that I should, don’t try and belittle me with snide remarks about my appearance or patronise me with gloomy predictions. I’m probably just a little more aware of what the future may hold, MS wise, than you. Much more.
Writing this has made me feel a whole lot better. When I articulate it to the next punter (victim!), you’ll be the first to know!
So, in answer to your question-blog or reply to blogs! It’s great therapy and has probably the reason that I’ve never even thought of joining a support group. Get that from the internet, and fear that like you, would be rejected for many of the same reasons. However, I do intend to go to the big MS fest (?Trust, ?Society) later this year, though I’m not sure where or when. I think it was in Manchester last year. Another hallucination?
Take care,
Honeysuckle
Hi Honeysuckle,
Thank you for your brilliant reply and lovely comment. I really miss blogging every day, but I know I need to give my all to my final year. I will get through the course, somehow, despite the brain meltdown! All back to normal in October.
I completely agree. I have been so offended recently. Another mother in my son’s rugby club has been diagnosed with breast cancer and (without denigrating her experience whatsoever), she has had offers of help flooding in (of course). I am happy she’s being supported. But what bugs me is that she has a lovely husband, family nearby and is well-off. I am a single divorced parent (not meaning to get the violin out) and yet I have received no offers of help from the same people, merely suspicious, often nasty looks and comments, ‘oh but we thought you were ill’, etc.
I too have been told by other people variously that everything happens for a reason. Huh? And yes, I have had the ‘you’re being tested’ comment and people urging me to fight. Oh really? Against brain lesions??
There’s a shocking amount of prejudice out there against people like us and it riles me beyond belief. I am deemed unworthy of help and support because I look ok. I’m not like Auntie Flo who bravely fought MS til the bitter end.
And thank you for hitting the nail on the head – the answer IS to enter the blogosphere. It’s really made me think. I can offload and people reply and put a different spin on things AND we’ve all had the same experiences. It’s wonderful to know we are not alone in this.
I went to MS Life last year. I had mixed feelings about it, but I was still undiagnosed so would probably feel differently next time around. I have a funny feeling it’s every two years but am not sure?
Lovely to hear from you!
X
i’d add a commnent but Honeysuckle really covered them all – i’ve had the, “oh i knew someone who died with that..” comment too.
my favourite was “how long have you got?” – http://itsashitbusiness.blogspot.co.uk/2009/09/steroids-23-plus-quick-question.html (sorry for the link again)
i also remember asking my neuro (at diagnosis) whether we should go to our local MS Society meet-up.
he said, “only if you want to get really depressed”.
so maybe we’re our own worst enemies??
a few of the events i’ve been to have been really positive (i call them MS FUN DAYS), some have been depressing – you takes your pick and takes your chances, i guess. never been to a national conference, though – would be good to put faces to avatars/names/pseudonyms.
Honeysuckle wrote a fabulous comment – probably better than my blog post! And yes, I think sometimes we definitely are our own worst enemies. We need to be more inclusive!
I have a meet-up with other MS Society support volunteers on Thursday and I’m really looking forward to it – if I do say so myself, we’re a fab bunch of people.
And I’m going to watch a firewalk on Thursday. Not taking part, no way.
X