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Is it just me?

I was diagnosed in 1983. I’d had symptoms for about 6 yrs before that. So I’ve now lived more than half my life with ms. I’ve learnt a lot. I keep myself well (as much as possible ) pace myself etc etc. over the last few years I have had periods of stress caused mostly by worry over serious illness in loved ones and the added load of caring for them.

Each time the dreaded optic neuritis has reared it’s ugly head. We’re old friends. My GP suggested I visit an eye specialist after the last episode just as a check. I did but I wish I hadn’t.

First question I was asked was why was I there. That’s standard. Then it became why do you think you had optic neuritis? Is the ms a confirmed diagnosis? How was it confirmed? And so on for over ten minutes. I know that the referral had my history even though it was an abridged version. I sat there thinking “why am I justifying myself to this person? I have ms. I have accepted it. I’m here to check that the last episodes have not caused extra damage.Yet I was being treated as though I was some hypochondriac wishing I had ms.” I came away feeling stressed and resentful. I felt crushed. It did however make me realize how fragile that positive outlook can become and how small a thing it takes to destroy it. Especially when I’m in a weakened state. Has anyone else had this reaction?

I’m usually so positive that I’m not liking writing this and I’m surprised how much the experience had upset me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Gordy
    4 years ago

    I have PPMS, and I totally understand your reaction. Ignorance is widespread, even within the medical profession – probably because the symptoms of ms can vary so much from person to person . I find myself becoming very defensive. It doesn’t help that the external ‘you’ often looks so well – the only give away for me is when I try walking. For an outsider, it’s almost natural to react with ‘ doesn’t seem to be anything wrong’. Of course, deep inside, you are screaming.
    don’t forget though, the eye specialist may have no experience of optical neuritis related to ms, and that’s what it sounds like. It’s easy to take things personally with ms, and the raw emotion of mood swings is a bit of a rollercoaster too. I try to remember that it’s not a personal attack.

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