Coming out

by Cathy

When a BBC researcher got in touch this summer via the MS Society after reading one of my Independent pieces on Coming Out with MS, I realised it was time to give some more thought to the manifold issues surrounding disclosing the disease. I was pleased that the ‘Coming Out’ would again get some national media coverage as I think it challenges many people’s misconceptions about Multiple Sclerosis in explaining what it is like to be a young(ish) MS’er.

I think the general public are unaware that MS is most commonly diagnosed in 20 and 30 somethings and that many of its early symptoms are invisible.

It is the difficulties of dealing with MS and an entirely uncertain future at a time when career and relationships are of utmost importance that we set out to discuss in the programme as it is in the arenas of work and romance that disclosing MS becomes most problematic. On talking further with the BBC researcher I was keen that my friend Andrew (who introduced me to shift.ms) should also be interviewed as his approach to disclosure was so very different to mine.

One element of coming out that we discussed in our interviews but did not make it into the final edit, was the way in which the need to disclose is also governed by your level of physical need at that point even with invisible symptoms. My blurred vision caused by optic neuritis was so bad on diagnosis, it would have been difficult not to tell my employer, I needed some allowances to be made. Andrew, as he writes here, kept his disease secret because he thought he could ‘get away with it’, his symptoms were much milder. The first time I met Andrew it took about ten minutes for him to emerge from an impressionistic blur as my optic neuritis calmed down!

The other issue I thought much about prior to recording the interview was just how much my open response to disclosure was germane to my personality and upbringing. As our mutual friend Emily says at the programme’s close Andrew and I remain the same people we ever were. I think if you asked most of my friends about the way I’ve handled things post-diagnosis, they’d say in a typically ‘Cathy’ way.

It is of course the importance of doing things in your own time and in a way you are comfortable with that is I think the message we most hoped people would take away from the programme. I hope when the films I mention are launched on shift.ms in the new year, that this will be another opportunity to revisit the subject of coming out and our responses to diagnosis. I am very excited to share this innovative new work with the community.

What now?

 

One Response to Coming out

  1. “I think the general public are unaware that MS is most commonly diagnosed in 20 and 30 somethings and that many of its early symptoms are invisible”

    I think this is very true and not just of the general public but also of older MS’ers who were diagnosed late on.

    I am in my early 30s and have RRMS and apart from when I’m fatigued and wobble around a bit from being so tired (and the only person who really sees me like that is my husband!), all my symptoms have been invisible. However, when I took my elderly mother-in-law to an MS Therapy Centre, on entering the common room, everyone assumed it was her who had MS as the arthritis in her knees makes her limp and she was much older than me. Even when I explained that I’m the one with MS and that her affliction is arthritis, most of the other ‘older’ MS’ers said ‘but you’re so young and you don’t look like you have MS!’. That has taught me the lesson of never assuming anything before saying something – it’s always better to ask an open question than a leading one thinking you’ve got it right when you could well have got it wrong!