10 Things Not to Say to Me when You Find Out My Mother has MS

But I saw her the other day; she was walking and she looked healthy.

Yes. Yes, she can walk. Currently her maximum distance is about 50 metres, and she does it quite slowly and touching any passing wall or object for balance, but you’re right, she can walk, so obviously she doesn’t have MS. We’ve been wrong all these years!

Oh, you’re very brave and strong! It must be so hard for you.

No, not really. It’s just sort of one of those facts of life, one that’s been there all of my life. I’m not telling you because I want sympathy. I just mentioned it because it is part of my life; take it or leave it but don’t change how you speak to either of us.

But I saw her here with you the other day: she seemed healthy and happy.

The thing with MS is that there are good days and bad days. If you saw her, then probably that was one of her good days. On the other hand, it could have been one of her really bad head days, and I asked her to come with me because I didn’t want to leave her alone. In that case, she’s quite good at putting on a happy act for people.

Also, in what situation did you see her? Were you sitting down, or was she? Oh, you saw her walk from the door to the couch? Evidence of perfect health! She can obviously run a marathon!

Well, at least she’s still walking; you can be happy about that, at least.

I just don’t know how to respond. Yes, she’s still walking. Not as far, fast or easily as two or five or ten years ago. That’s the nature of the disease. Yes, we’re very lucky that her MS has progressed as slowly as it has. We’re aware of that. But don’t diminish all the other struggles we have by telling us we should be happy about the ones we don’t.

I just heard the other day about this new cure they have for that!

If it’s a diet, shut up and go away. There was a diet fad people were convinced about a few years ago that supposedly cured MS that involved only eating starch and fat. We took one look at that and know of course that it would just make her sicker, and not from the MS! Be realistic!

I’ve heard “gluten only”, “no gluten”, “no meat”, “fruit only”, “no fruit or sugar”… just about everything you can think of has been suggested to us as a miracle diet cure for MS.

If it’s that stem cell treatment, then that’s ridiculously expensive, not available in Australia, and only works on people with Relapsing Remitting MS. While my mother’s official diagnosis is still RRMS, the neuro has labelled her as transitioning to Secondary Progressive, which means that the disease is now beginning to function in a different way, and the stem cell treatment either won’t work or won’t work as well. Of course, the amount of money it will cost will probably give her a heart attack, and then the MS would be the least of our worries.

She should move to the Northern Territory/ Queensland. Hardly anyone has MS there.

Hmm. I know. I also know that heat and humidity are hell for someone with MS. If you’ve ever seen an MSer with heat paralysis, you wouldn’t suggest that. You know why I think there are fewer people in the NT with MS? Because they’ve all moved south!

Also, there’s only one neurologist in the Northern Territory.

The doctors told me/ my relative s/he had that, but then s/he ate nothing but raw vegetables for a year and exercised for an hour every day, and now s/he doesn’t have it any more.

There’s a man we know who honestly did this, but he looks like a warmed-up corpse. Seriously, every time I see him he looks sicker and sicker, but not MS-type “sicker”. He’s convinced that the doctors got the diagnosis wrong and that he’s cured himself. He doesn’t know thing one about MS, because he didn’t bother listening or researching in the first place, and didn’t know the answer when I asked, upon our first meeting, “Relapsing-Remitting or Primary Progressive?”

I suspect he has Relapsing-Remitting and that one day he’s going to have a relapse and realise that he was wrong. The thing with RRMS is that you do have worse spells, and then it remisses and you can be perfectly healthy and forgiven for thinking you’re cured or it’s gone away. It’s common for people after their first relapse to think that, and it can be years until the next one.

Just because you or your relative had one horrific MS spell during which you were diagnosed, and then “got better” doesn’t mean you don’t still have MS.

Oh, that’s what Stephen Hawking has, right?

Close but not quite. That’s MND, or Motor-Neuron Disease, also known as ALS or Amyotrophic Lateral Sclerosis. They’re both neurodegenerative diseases of the central nervous system, and a lot of the visible symptoms can be the same. However, ALS attacks the neurons themselves, while MS attacks the coating on the neurons. The end result is the same: non-functioning or non-existent neurons.

But, broadly-speaking people with ALS have more physical problems while people with MS have more mental problems. In other words, people with ALS are more likely to become paralysed, while people with MS are more likely to have dizzy spells, blurred vision, phantom pain, and memory issues. That’s why Stephen Hawking is still writing scientific papers, but my mother’s forgotten several recipes she used to know inside-out and back-to-front.

Muscular Dystrophy? Are you sure?

Yes, I’m sure… that it’s not. It’s MS, not MD – multiple sclerosis. Her brain cells and/or myelin sheath have grown scales.

But she’s walking.

True. But MS is a neurological disease, so it affects other bits of the body than just the legs. She has trouble walking, but she has more trouble with optic neuritis (blurred and dimmed vision), nerve-misfire pain, spasms/spasticity, numbness and fine-motor activities. And that’s just the physical problems.

If I mention my mother’s MS to you, I’m not doing it because I’m looking for sympathy. It’s true, I go through her good days and bad days with her, and there are some times when you might just need to let me vent for a few minutes. Sometimes I do need someone to talk to who understands (at least in some way) the situation. At other times, I won’t want to talk about it or hear about it at all.

I didn’t bring the topic up now to get your sympathy or because I want a long conversation about it, her, me, or any of it. Probably I just mentioned it in passing because it was relevant to whatever we were talking about, or necessary information for understanding an anecdote. Or possibly because it’s part of my life, and has been for all my life, and that makes it part of me and the things I say and do and talk about. Not because it’s weird or unusual or necessary of comment, but because it’s normal and unremarkable.

So don’t you get weird about it!


One thought on “10 Things Not to Say to Me when You Find Out My Mother has MS

  1. Ruth Hay says:

    Thanks Rachel. Invisible diseases, such as MS, are very misunderstood.

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