My Experience With the Progression of Multiple Sclerosis

Updated on June 19, 2017
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The author was diagnosed with multiple sclerosis in 1997. She lives in Australia.

All over the world, there are thousands with multiple sclerosis.
All over the world, there are thousands with multiple sclerosis. | Source

You are definitely not alone

I’ve recently discovered that I’m not the only one, there are squillions more people with multiple sclerosis (MS) out there in this big wide world.

You're probably thinking I’ve been a bit blind—how does she not know that? She's practically an expert isn't she, having lived with MS for almost twenty years?

I've known how it feels to be diagnosed with MS, and I've blundered my way through all of its 'stages', so far. So I do think I can safely call myself an expert on this diabolical disease.

But it’s actually not strange that I didn’t know there were so many of us. Because we people with multiple sclerosis are damned good at keeping secrets, damned good at hiding our difficulties. So if you've been fancying yourself as a budding Sherlock, I double double triple dare you to find someone who’s been newly diagnosed with this disease. I do put one condition on this challenge, though: they must have been diagnosed at least three months before you find them. Give the poor devils time to find out what the hell they’re dealing with, give them time to cry, give them ‘why me’ space to wallow in. All of that is necessary; in fact it's essential to the newly diagnosed.

The sneaky genius of an MS diagnosis

In a typical case, once a person is over their first MS episode, and recovered from the first awful taste of disability – then is when you will see absolute brilliance. With a sprinkling of scullduggery. Because MS (usually) is diagnosed at the “Relapsing Remitting” stage. It comes, and it goes. Just like that. It literally smacks you in the head, deposits a few scars on your brain, then takes off. Zoom. Just like that.

Well, it pretends that it’s not there.

And the person who got the smack in the head carries on like nothing happened. With maybe some left-over pins and needles, or feeling a bit numb here and there, or maybe a little blind spot in their vision, any number of little things can be left behind, and sometimes it seems like it’s completely gone. The person with MS thinks they’ve escaped. Or been given the wrong diagnosis. Excellent. Silly doctors, what do they know? But maybe not? We learn that that’s what happens in a lot of cases. So we’re a bit unsure, but still in a state of glorious denial.

Our mission, and we choose to accept it

And so we pretend. We trick you. We lie. With the best intentions. We’re not convinced that we truly have multiple sclerosis, yet. And we don’t want to make you feel bad or anything like that.

So what if we have to hold on to the rail when we walk up or down the stairs? We’ll laugh, we’ll say ‘don’t mind me, you go ahead, old age is getting to me,’ haha. And you’ll think that we are so funny, old age indeed, goodness she/he’s a scream isn’t she/he. Haha.

We’re not telling you. Even when we do know that we truly do have this thing they call MS. We’re not letting you think there’s something wrong with us. Why is that? I can tell you. It’s because of the way society treats the disabled and infirm. Get yourself a serious medical condition and see for yourself. Go on. More than a small percentage of people who receive a diagnosis of a progressive disease will keep it to themselves, only sharing with their closest confidantes - purely through fear of being treated as less worthy, or even mentally deficient.

People suddenly see you differently, and see you as Mrs or Mr Stupid. MrHesGotaDiseaseIDontKnowAnythingAboutButHeCantBeRightInTheHead. Maybe that's a bit harsh, not everybody treats us that way. Sad thing is, some do. And believe me it is infuriating.

But that's a story for another day, for now know that this is true and does actually happen more often than most of us would like to think.

And so, if and when we can / because we can, we hide it.

We become masters of deception. If you're not super-close family, we won't tell you, if we can get away with keeping schtum we will - MS is shared on a strictly 'need to know' basis. I did it for 16 years. If you are new to your MS diagnosis, consider that a challenge … how long will you hide it for? And p.s., you’ll be okay, honest. I know it looks bad from where you are right now, but from where I am I’ve learnt that it can be okay, even though this all may sound otherwise (just trust me, it’s okay).

And then my legs gave me away. Can’t hide the fact that I walk slow and often with a limp, no hiding now. Dammit.

Seems to happen suddenly to most of us, too, this progression.

Source

Sticks, and stones

So, when mobility becomes an issue, we have a whole new world to get comfortable with. The world of walking sticks and assorted walking aids, the world of having to think hard every time we want to go anywhere, is it easy to get around, do they have disabled access, how far is it from here to there, how will we get there, and when we get there will we be able to do whatever it is we’re there for anyway?

It’s taken me months to get used to carrying a walking stick in public, but I’m ok with it. I think. A case of having to. But I am that far at least. Nobody tells you that it takes getting used to, that it’s not easy having to carry a stick everywhere. There’s no beginners course for that, you’re on your own. I’m learning though, despite some close calls I haven’t injured anybody yet. Just myself. Doing well really.

Uh oh ...

And then you start to have the odd fall. You seem to be able to trip over the smallest thing. Your foot (usually just one of them, thank heavens) starts being decidedly uncooperative, and droopy, and you can be sure you'll realise this is a problem just when you need to walk down that bumpy, stony, higgledy piggledy path – and you realise you hadn’t ever noticed how rocky it was before. And you learn, after a couple of falls and maybe a sprained ankle or two, to take a lot more notice of where your feet are.

Exit … Stage Right?

From my experience, having MS progress to the next stage was truly like having the initial diagnosis all over again – a time of outright shock, how could this happen? All that stuff. Real disability staring me fair in the face. Then again, it might not be so bad, might stay the same for years yet, walking was still possible, within limits but that was ok. Same as always really, nobody knows, so just hang on tight and do what you can with what you have. That’s where it goes. That’s where a huge number of us land.

And on this voyage with MS, we learn a lot. A LOT. About life. About people. About what is and what isn’t important. And it’s ok. We are ok. You are going to be ok. There are so many stages to the progress of this disease that no-one can tell you everything about them, no-one can prepare you for them, but you will go through them all, and survive them all – and yes, grow stronger through having experienced them all.

There are thousands of us, from every corner of the world, each with our own story, each of us tackling a different stage and each of us growing stronger without even knowing it.

Hang in there.

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