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Why MS Is My Secret


Thursday May 17 2018 11:00 AM

This week the MS and Me AnonMS blogger, a health care professional, shares with us an insider’s perspective on disclosure. Does disclosing MS status lead to the condition overshadowing all other aspects of a person’s life and reduce them down to a diagnosis?

There are times when I am tempted to mention it. Particularly when I’m having a bad day and someone in work is complaining about their back pain or their thyroid issues or their respiratory problem. I can have a brief fleeting fantasy of myself smiling and nodding and chipping in with “Well, with my multiple sclerosis…”. That’s as far as the fantasy ever goes though. Because after that bombshell I know there would be shocked faces, stammered words and the overwhelming sense of panic that I’ve dropped the explosive and can’t undo the damage. It’s not that I feel their health issues are not serious or not problematic. They just all seem so much safer and palatable to discuss over morning coffee. So, I make sympathetic noises and say nothing.

I work in healthcare, so I can see the health system from both perspectives. My colleagues are wonderful, kind and caring people but the problem with working in healthcare is that our knowledge of a condition can be best understood by that sad case study or this complex patient. Our vision is often distorted by our circumstances. We tend to see people at their lowest point and on their worst day, when staying at home isn’t an option and forget about the many other days when they were coping and managing just fine. Worst case scenarios tend to overshadow the “living well” in our minds. This is problematic for me because, were I to tell anyone in work about my diagnosis, I know their understanding would be coloured by a previous interaction or difficult discharge that may have absolutely no bearing on my circumstances. Yet this will be their most memorable reference and example of MS. I know they would paint my outlook with the same brush whether they realise it or not.

People with MS are still very misunderstood and pitied. It can have the ability to overshadow all other aspects of a person’s life and reduce them down to a diagnosis. I have seen people rebranded as sad anecdotes and cautionary tales. I don’t want that to happen to me. I am generally not someone who wallows in self-pity or spends time wishing that things could have turned out differently. My diagnosis gave me the drive to do the things and see the places I had been putting off. The next relapse could be closer than I think and I don’t want to look back and wish “if only I had…”. If people find out I have MS I want them to be surprised. I want them to have had the opportunity to see me, without the distraction of MS, as someone who achieved a lot and was a good colleague or friend. I want people to see me without those two letters blocking their view.

Author: MS & Me AnonMS Blogger

Tags: ms, multiplesclerosis, disclosure



Thursday May 17 2018 16:06

Well said. To tell or not to tell? That is the question and each answer is a very personal decision


Friday May 18 2018 11:22

Hi. Read your post, which I think is excellent. I work in healthcare too and know where you are coming from. I remember once telling a colleague my diagnosis and having them burst into tears. Having checked RIP.ie I was reassured that I hadnt died after all and had been too busy to notice. I'm pretty wary about letting people know now as I'm a full time working mum and thats how I view my identity and not as that woman with MS.


Sunday May 20 2018 15:25

Hello, Thank you for writing such a wonderful point of view from your own perspective, absolutely excellent.
If it's not too forward I totally agree with your decision,,,, you see once it got out I suffered MS yes I was treated differently by both family & work colleagues, That look of pity was unbearable in the end. I realise these people meant well.
When I was extremely mobile I got on with my life quite happily, now it's different ,,,,, yes I've regrets of putting travel & such like on the long finger.
You I really hope will do & go everywhere you've always wanted too, please don't leave anything on the long finger. You go for it all live your dreams. . Keep positive never loose your will or stamina. Best of luck, enjoy keep smiling always. Thank you


Tuesday May 29 2018 18:05

I feel the same. I am no longer a person. I am MS. That’s how I feel when I tell somebody and then all our conversations revolve around how “bad” it is. I have PPMS which not many people seem to have. I am alone in my disease. My walking is now so bad that I’m going to need an aid soon and so will have to disclose my MS secret. I already live in dread of that day.

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