MS Sufferer - dirty word or badge of honour?

Hi all,

It’s been a long time since I posted here but following on from numerous conversations I’ve had with fellow MSers recently, I have written a blog post articulating my views on this subject.

This is a link to my blog https://teejaystravelogue.com/2016/10/01/ms-sufferer-dirty-word-or-badge-of-honour/#comments

I would really love to hear what you think.

Cheers

HKFooey (aka TeeJay)

Hi HKF,

Good blog; gets you thinking, never regarded myself as a ‘sufferer.’ I thankfully am one of the lucky ones and never had any pain or cognitive problems.

These are symptoms where someone can say they suffer! Yes I am confined to a wheelchair; yes I’ve had my leg amputated owing to MRSA but I still lead a good life.

For the first 2 limboland years I told anyone who asked it was a virus; it was a form of sleeping sickness even it was a karate accident. I did not know so how could I tell them.

After 5 years and I became a wheelchair user (because then I could do my job) I gave people both barrels when asked not proud of having MS. The person asking was entering a minefield of speculation they had no idea where it would lead.

No I would not say I wear my diagnosis with pride; it’s fact; it’s there 24/7 and it loves reminding you. Am I in fear of it; no; no; no after 44 years I would worry if it was not there?

Good blog you wrote especially for limbolanders.

George

1 Like

Love the blog. I think I prefer the word “victim” - but them most victims suffer

Yes, I have MS, and I am not too proud to tell anyone that MS is what has me in this condition.

Keep writing.

Geoff

Hi TJ,

Your piece is very important and powerful and deserves a wider audience.

I have designed a PowerPoint presentation and approached local clubs, societies and organisations if they are interested in a talk about my personal experience with MS.

I’ve discovered that it’s hard to get people interested in informative and educational matters. Or perhaps my marketing skills need sharpening.

I recently came across a maxim which I rather like, “I am defined by my ability, not my disability.” I approve of the defiance.

Regards,

Anthony

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Hi George,

Good to hear from you.

Interesting points you raise. Next time anyone asks me I will tell them this is a result of a karate accident & see what reaction I get.

But if I woke up one day and my MS was gone I wouldn’t be worried; I would jump for joy, just because I could. Roll on that day, it’s what I dream of!

Thanks for your reply.

HK

Hi Geoff,

“Victim” - now that is a very emotive word.

I’ve been told by those sensitive to the term “sufferer” that they don’t like it because they feel it labels and defines them. I disagree with that. I say it only defines us if we let it; what really defines us is our attitude and how we deal with it. I’m not about self pity, I am simply a realist. And I don’t think denying some hard truths does us any favours

I certainly have no intention of giving in to MS, I won’t go down without a fight.

I think my preferred term is MS warrior but then I’m told some folk don’t like that because it sounds like we are aggressively fighting a war. My answer to that is living with MS is a constant battle!

You just can’t please everyone.

Thanks for your reply & the encouragement. I will keep writing.

TJ

I am not happy about mentioning I have MS. I say nothing - my diagnosis is a private matter.

Why does illness have to be so public?

1 Like

Hi PJday

Because your your infirmity and behaviour gets misinterpreted as being caused by something even less socially acceptable.

I know mine has been.

Anthony

Hello PJ

It’s an entirely personal choice.

Ever since I was diagnosed I’ve had a very visible limp which has gradually got worse. If people ask me what is wrong with my leg, I tell them. It’s not something I shout from the rooftops, but if someone is interested/nosey enough to ask I’d rather give them a straight answer than let them make their own assumptions why I stumble and fall down a lot.

If you don’t want to reveal your diagnosis that’s your business, there’s no right or wrong approach.

That’s a personal choice about whatever you feel is appropriate disclosure and what you feel comfortable with. I know people on both sides of the fence.

But that wasn’t the point of my blog. I was asking if someone uses the term " MS sufferer" is this an insult or are people who perceive it that way being over sensitive?

Have a good weekend.

[quote=“albrecht durer”]

Hi PJday

Because your your infirmity and behaviour gets misinterpreted as being caused by something even less socially acceptable.

I know mine has been.

Anthony

[/quote] i so agree with you!! you can b thought of, as a drunk, drugs, or js swinging the lead!!

if asked tell them, but make them understand!! if they are interested, if not FORGET them

but you can have fun with the stupid one’s—like when i was young i was a ??? crash test dummy!! your imagination will make you smilewink

Juliensmiley

1 Like

I want a Tshirt that reads “I’m not just drunk, I have MS too!”

Sue