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Introducing The Unaffected One

25 June 2015
The Unaffected One
My MS Journey
invisible symptoms
relapsing ms
working

I have been living with rrMS since 2002.  As someone who is mainly affected by the “invisible” symptoms of MS, such as fatigue, vision problems, intermittent vertigo, a subtle tremor and balance issues, I can generally choose who is aware of my diagnosis and who is not. I work as a physician in a major teaching hospital. Several of my colleagues know I have MS, but I don't think my patients would have any idea. 

It is a source of amazement (and even amusement) to me how little knowledge of MS many health care professionals have.   I had been living with MS for more than 10 years, had lost count of the flares I’d experienced and had moved to part time work before I disclosed my diagnosis to a delightful professor of medicine.  Without hesitation he responded “Aren’t you lucky it hasn’t affected you?”

That’s me - the unaffected one.  And this blog is about life from my side of that picture. Thank you for joining me!

 

The Unaffected One

Facebook: https://www.facebook.com/unaffectedone

Twitter: https://twitter.com/theunaffected1

 

Comments (14)

Sarah Flaim's picture Sarah Flaim replied on

Ha - "aren't you lucky" and "MS" don't really belong in the same sentence do they? I do find people's responses vary so widely - as so does the disease presentation and prognosis itself. Thank you for sharing!

The Unaffected One's picture The Unaffected One replied on

Hi Sarah. I don't think I would have minded being called "lucky" if it hadn't been followed by the words "it hasn't affected you". It was pretty hurtful to have my ten+ years of lived experience of MS trivialised like that! But on many levels, I know I truly am lucky. To have near normal mobility over thirteen years on from my diagnosis is a blessing I am very grateful for, and not what I was told to expect by my neurologist, as I'll cover in my next post. I guess it's human nature that I can both be glad to appear so well most of the time, but also want a bit of sympathy sometimes!

Lawrie's picture Lawrie replied on

Can't tell you how comforting it is to read a health care professional acknowledge how little knowledge of MS many health care professionals have! I think we are seen as a group, firstly, rather than individuals, and that group as being the preserve of specialists, and I think many of those specialists may outsource their knowledge of MS to some extent. In my experience it may well be possible that many specialists (who don't actually specialise narrowly on MS) have a distinctly limited view of what may cause MS, and the treatment options available. As someone with advancing MS, that grieves me. Tell us more o unaffected one!

The Unaffected One's picture The Unaffected One replied on

Thanks Lawrie. Grief is a really good word - and I'm sorry to hear that lack of understanding from those who you go to for care continues to cause you so much grief. I don't really understand why there is such a lack of MS knowledge out there (it's not as if we have some rare disease that they don't have time to cover in the average university course!) but I'm the first to admit that I also knew almost nothing useful about MS until I was diagnosed! One of the reasons I choose to disclose my diagnosis to most of my colleagues is the hope that I can improve knowledge of MS, at least among the people I work with. It certainly causes a few looks of shock / surprise when medical students meet me as a patient and realise that their teachers can also be mere mortals! And student by student, I hope I give them a kernel of experience that will one day help them deal better with another person with MS.

Rebecca Starr's picture Rebecca Starr replied on

I second Lawrie on the lack of knowledge amongst health care professionals in regards to MS, we are all different, with different needs, yes some of our symptoms are the same, but no two people with MS are the same. So it will be interesting to read your blog as a person with medical knowledge and MS. Looking forward to more from you.

The Unaffected One's picture The Unaffected One replied on

Thanks Rebecca. So true about every one of us being unique and different! Maybe that's why I value my wonderful GP so much? She doesn't pretend to know everything, but she knows to ask me how I'm feeling and listen carefully when I answer. A valuable skill! Looking forward to blogging about my own experiences - and perhaps highlighting how imperfect I am, just like all the others out there in healthcare. :)

Amber Airey's picture Amber Airey replied on

Lucky and Unaffected! Wow! Way to not only make your invisible illness seem unimportant, but to make the person carrying the disease also seem so too. Thank you for sharing. :-)

The Unaffected One's picture The Unaffected One replied on

Thanks Amber. I think his comment was intended as a sort of compliment or congratulation. Probably only another person with MS can fully understand why it felt dismissive at the time! We've since had a good chance to talk it over and I'm pleased to report I did get an apology!

Samuel Walsh's picture Samuel Walsh replied on

A great read, thank you! Language has such a massive impact on us all doesn't it? A flippant remark from someone can really stick with us. You're spot about how dismissive this language is. Looking forward to reading more from you.

The Unaffected One's picture The Unaffected One replied on

Thanks for your kind comment, Samuel! I"ve been thinking a lot about how powerful the influence of words can be - including comments that may have been just a "throw away line" to the person who spoke them, but sometimes can have a profound effect on those to whom they were said. I'm planning this as the topic of my next post, actually!

Pilgrim's picture Pilgrim replied on

It brings me so much hope that you're using your experience, position and skill to help prevent such a 'delightul' professor ever making such a comment again. What a horrific interaction! Thanks for sharing - really looking forward to learning more about life on your side of the picture.

The Unaffected One's picture The Unaffected One replied on

Thanks for that, Pilgrim. It's nice to finally share that story with people who "get" why it stung at the time! The professor who made the comment really is one of the nicest and kindest people I know, but presumably he has very little experience or knowledge of MS, as he works in an unrelated area. I'm pretty sure he did take on board the conversation we had afterwards. And I'm looking forward to discussing life with MS more in this forum, too - thanks for joining in!

The Purity Of Evil's picture The Purity Of Evil replied on

Lucky, eh? Well, I'd say that it's us - your readers - that are lucky. You have a writing style that makes your writing so easy and wonderful to read. Yeah, I'm just writing a blanket comment to cover everything I think about all of your entries - energy conservation? Heheheeh... Anyway. Thank you for writing, here, and I look forward to reading so much more.