2015autoimmune diseaseChronic diseaseInspirationalMultiple SclerosisWriting

Reading about MS: Time for a few confessions

People with MS write about MS

I’m a reader. And since being diagnosed with Multiple Sclerosis, I’d developed an obsession with reading books by other people with MS.

But let’s be honest. Having MS does not automatically make someone a good writer (and I include myself in this category, criticisms welcome).

But I have learned something from every single book by someone with MS. And I don’t say that just because the blogosphere expects positivity. I mean it.

MS is so bloody random. And it can be lonely. My MS neurologist, who has seen hundreds of people like me, has been surprised by a few of my symptoms, categorised them as interesting-but-weird, and shelved them for future consideration.

That is not a good feeling.

And so when I read about an experience or a symptom that a stranger has had that mirrors my own, the relief is palpable.

It is therapeutic. It is heart warming. And it really does make me feel more in control of this disease.

The best MS books I’ve found so far

The two outstanding reads I have come across so far are Awkward Bitch by Marlo Donato Parmelee and Blindsided by Richard M. Cohen. Both taught me a great deal.

Marlo, your disorientation on a busy train platform in London during an MS episode (in the chapter ‘Wonderland’) made me laugh in sympathy. My experience mirrors yours, and gives me the courage to confess what I’ve only told my partner and sister: during an MS episode I’ve become disoriented in an airport (one that I have travelled to and from dozens of times) and missed my flight.

Richard, your personal MS experience, as well as the interview-based Strong at the Broken Places, has inspired my own project, What We Don’t Talk About.

And Matt Cavallo. All I can say is thank you. You are the only person I have come across that has had the courage to confess that you found yourself in the emergency room prodded by a series of doctors insisting that you were in renal failure because you couldn’t feel your legs. Thank god I’m not the only one.

You can see my MS reading list here, and my full library here. I know there are more MS books out there. Recommend them to me!

3 thoughts on “Reading about MS: Time for a few confessions

  1. Although I haven’t read very many MS autobiographies, it definitely is a good thing to do…we all need to be able to read someone else’s story and go…”thank goodness it’s not just me!” Will definitely look up some of the books on your list. I’ve also got a few on mine.?

  2. Well, it’s been six months since diagnosis and I hadn’t even considered reading books about others’ experiences. I don’t know why it hadn’t occurred to me! (Let’s blame MS!) Reading blogs has been such a supportive experience, I have a feeling I’ll be reading some books in my near future. 🙂

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