For me, the best side effect of having MS is the support of fellow MSers.
MS nurses, neurologists, charities are brilliant, but there’s nothing like talking to another person with MS. They just….understand.
Whether they’re virtual friends made on Twitter and through blogging or people I’ve got to know in person over the past few years, the support is incredible. No worry is too small to share, no question too random.
So why is there an insidious underbelly of hierarchy among people with MS? When did MS become a competition? I have heard many variations on these comments:
- ‘You’ve only got relapsing remitting? Hah! You don’t know the half of it.’
- ‘Oh, I’ve been in a wheelchair for years, you don’t know how blessed you are.’
- ‘How many times a day do you fall over/trip/stumble?’
- ‘You’re lucky, there’s nothing they can do for me. I just suffer with it.’
- ‘Wish I could be in remission, I just get worse and worse.’
- ‘Are you sure you’ve got MS?’
And the absolute killer when it comes from someone with MS, ‘But you look so WELL.’ I’m glad to say these people are in the minority, but it still cuts deep. Should I not be allowed to say I’m in remission for fear of upsetting other people? Shouldn’t we be celebrating new advances in disease modifying drugs rather than sneering at those who have the opportunity to take them?
Then there are those people for whom MS becomes their entire raison d’être. They exist in an MS bubble, proud of their suffering status. They are unwilling to say or do anything that’s not connected to the huge cross they bear. And more often than not, these people aren’t even the worst affected by MS. Whilst it is comforting to be surrounded by fellow MSers, this does not define my life, just as MS doesn’t. I may have to live with MS but it certainly isn’t the focal point of everything I do. That would be as good as giving up.
For me, it is far more positive to show that you can live a rewarding and fulfilling life alongside MS. We might not be able to cure MS just yet, but we can begin by dropping the competitive element. Aren’t we all in it together?
Once again a brilliant blog. You hit the nail on the head every time. X
Thank you! Must admit, I thought I’d get hate mail for this post, lol. But a few other people with MS have also said pretty much the same thing!
X
Hi , i dont normally comment anymore but i still read every post you write , but this one just made want to say something . I remember my dad saying that when he got diagnosed with SPMS after having RRMS that he felt somewhat seperated all of a sudden from a few of the friends he had made through out the years he was sick . And i remember him saying how he didn’t understand why some folks seemed to suddenly stop chatting to him , mostly on twitter , it was his favorite site and loved the folks he connected with there and here on this blogg . But i think it worried him to think that folks suddenly felt that he maybe saw himself as being more sick than others . I remember he said one time that even though MS can be so different for everyone who had it,that HE hoped folks all realized that” MS is MS NO MATTER WHAT STAGE IT MAY BE AT ” but MS support should never be put in any kind of stage it should always be the same no matter what form or where your at with your MS that MSers are all still MSers and support and caring should never have a stage or level or degree , you all need to be ONE against a monster, and sticking together is the best way to win this fight !!! Wellim sorry to wtite if i shouldn’t have coz i don’t have MS myself , but i did watch dad through alot of years battlING this “MONSTER” and all of the support from wonderful people like yourself made his life a WHOLE LOT BETTER!!! I guess i’m just trying to say that i think your post was great and i hope if needed that it will make some folks stop and rethink a few things ! By the way my dads name was Scot ( MISS HIM A TON ) .
Hi there Cody,
Excellent point from a different viewpoint. And you’re right, MS is MS no matter what and we should all support each other no matter what.
x
hi Cody – as i think i said to your dad on this very site, people with SPMS scare the bejeezus out of those with RRMS – it’s just a bit too close to home for some people, eh? we’re all one re-diagnosis away from it!
i tend to be a bit of an old hippy and think we’re all in the same crappy, leaky boat and should just look out for each other REGARDLESS – chronic illness or not.
the idea of MS-oneupmanship is so redundant as to be totally laughable – “ok, fine, whatever, i’ll let you have that one” – these people shouldn’t expect me to hang around, i’ve got (relatively minor) problems of my own!
another rambling comment from The Old Hippy…
sorry!
x
Too, too true. We are all in the same boat, with or without MS. Life is hard enough! Just because I have MS doesn’t mean I take my friends problems any less serious. In fact,their problems are usually way more serious than mine. I’m a bit of an old hippy/overgrown student too – life is short, watch out for the karma and do to others as you want to be treated yourself.
x
p.s. I love your rambling comments…
it drives me insane :/ we all have MS, why do we have to make it a contest about who is worse? :/ That is actually one of the main reasons I avoid the forums and MS groups, I don’t want to deal with the drama.
Its all about wanting to feel more important then someone else, even if its because they are more ill
Couldn’t have put it better Jennifer! It drives me bonkers too. I hear it so often I could scream, lol. Sometimes, no matter what I say about my MS, someone always, always has it worse than me.
How people can gain a sense of importance by flaunting a degenerative disease is beyond me. I would rather be known as someone who did something despite MS!!
X
Goodness, as a newbie I haven’t experienced any of this yet!
I wander if it is just easier for the competitive ms’ers to have allowed their condition to completely take over their lives, rather than find the strength to deal with the condition and live the lives they had. If so then I imagine they feel they have to accentuate their ms to justify their new position. Particularly in front of people who are getting on with their lives as normal despite having it.
Personally I can’t wait to get my meds organised, because then I can take a rest from the topic that has dominated the last 12 months and get back to living my life. Ms is here to stay but I am afraid it is going to have to adapt to my life! (I pinched that line from somewhere, I forget where, could be here. 🙂 )
It has often been pointed out to me how stubborn I am, well they haven’t seen anything yet!
Hi Julie,
First off – don’t worry tooooo much. It’s just one of my bugbears, lol. Ranty couple of blog posts recently. I think for some people (with any chronic illness, not just MS), it perhaps fills a gap in their lives? I’m not sure. It gives them an identity? There’s an interesting theory about biographical disruption – when something big happens to disrupt your life, you can either immerse yourself in a new identity or just assimilate it into your life.
Good luck with your meds – must be a huge relief!!
X
This is fantastic – spot on.
Thanks Sam!x
Great blog again Thank You x
Thanks Tricia!
x
First of all, I think your blogs are very good, I yearn to write with the same ease.
I’m going to be the awkward sod. I have never come across a competitive element within MS. Yup MSers will exchange stories, symptoms and complaints, who doesn’t? So far I’ve never come across any form of competition. If anyone wants to be competitive about it then I just walk away.
You say “For me, it is far more positive to show that you can live a rewarding and fulfilling life alongside MS.” Every one I’ve come across seems to think that way. Maybe I’m lucky.
Patrick
Thank you for the compliment Patrick!
I do think you’re awfully lucky, but as you say, you just walk away if anyone wants to be competitive, so maybe that’s why! I guess I’m the awkward one as I stand and listen to them, lol.
And I’ve certainly met a whole lot of MSers who don’t live a rewarding and fulfilling life alongside MS and I do find that very sad.
I’ve probably bored people to tears with this, but after growing up without a father thanks to MS, I am passionate about living as full a life as possible despite my diagnosis and sometimes I get angry when people ‘compete’ about MS, as my dad didn’t even get the chance to live beyond 35. If that makes sense?
x
I do understand what you say about living as fulfilling a life as possible. I’m with you there.
At times it does pay to be a selfish so-and-so and walk away from other people’s problems. Its your life & you must put your self first.
‘Nil carborundum illegitemi’ or don’t let the bastards grind you down.
Patrick
I love that!! I’m going to write that out and put it on my noticeboard!
x
I just found your blog and I love it!! The thing is, i believe everyone in the world deals with SOMETHING!!! And it’s not what you have to live with but how you live with it that shows you strength and who you really are! MS really sucks but it always could be worse. I don’t want to be remembered as the woman with MS but rather the woman her enjoyed her life even with MS
Thanks again for your positive blogs!!
Hope
Thanks Hope! Love your comment – funnily enough, that’s exactly what I was talking about with a friend yesterday. We all have something, and yes, it’s how you deal with it that sets us apart. In some weird way, having an illness relatively early on has given me a boot up the jacksie to sort my life out for the better.
x
great post! i haven’t experienced this too much since i’m not around anyone who has MS. my biggest pet peeve is when i complain about a symptom and non-ms person is like “oh, yeah. that happens to me, too.” seems like everyone wants to steal some ms thunder.
Thank you! I’m totally with you on that one – especially when it comes to explaining to people how tired you are. Honestly, it does my head in. ‘Oh, I get tired too’. I’m sure they do, but boy, I just want to bash them over the head so they really knows what it feels like, lol.
x
[…] a blog recently where someone talked about refusing to let the MS be the thing that defines her here … our challenge now is to not let my MS be the thing that defines me or the childhood […]
This is such a brilliant blog – why haven’t I found it before? You are so right about trying to explain the fatigue – so much more than just getting tired!
Thank you so much Julie! You’ve made my evening 🙂
Yup, it’s the absolute bane of my life trying to explain fatigue. Makes me even more tired, lol.
x
Hehe! This post has made me smile. I don’t hang around too many Ms online groups etc for just this reason. There is always someone who has to bring a positive post down where an mser has had a good day or a positive experience by saying ‘phew it’s OK for some..I’ve got this wrong with me or that which you just couldn’t understand’ I’m sure they do but how about being happy for that person. Start their own thread and let others wallow with them there. Sorry. I’m being nasty, but we all have our lives to lead. I choose to have a life with with MS not Ms and no life.
An excellent point! The whole one-upmanship was a bit freaky to start with.
And yes, there’s plenty of blogs and forums out there to wallow around in 🙂
X