Why MS Is My Secret

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.