I’m new to this site, so by way of introduction, here’s my MS story in brief: I was diagnosed in October at the age of 30, but the first signs came almost seven years ago with a couple of episodes of sensory symptoms (tingling, blurry vision). At one stage I had an MRI and was told it showed ‘slightly more white spots than we would expect for your age’. But MS was never mentioned - and I then went around three years with no symptoms at all, so had almost stopped worrying about it.
Fast-forward to October, though, and I woke up with double vision. I was referred to another neurologist, and after another MRI, he diagnosed ‘mild’ MS - but advised that as I’d gone so long without a flare-up, there was no need to start DMDs yet. Well, five months later, here I am with another flare-up (tingling/pain/bizarre sensations in the leg). My neurologist has told me that unfortunately, this means I do need to start DMDs after all - and I guess that means I can’t continue to pretend this isn’t happening, either.
So, my question to all of you is… who did you tell about your diagnosis, and how did you tell them? Back in October, my neurologist advised me to keep it on a ‘need to know basis’, and so far, my (extremely supportive) boyfriend is the only one who has needed to know. I hoped it might stay that way if I again went a long time without another flare-up. But now that I need to start treatment, I feel like it’ll be harder to hide it from my family (or my employer).
The thing is, I’ve kept my parents in the dark because I didn’t want them to worry. I’ve kept my employer in the dark because I work in a senior position at a media company, where long hours are par for the course and I feel that people will question my ability to do my job if they know. I’ve kept my friends in the dark because I just don’t know what to tell them. My boyfriend was with me in the neurologist’s office when I was diagnosed, so it wasn’t me who had to break it to him, and it was still hard to put him through it. I just don’t know how to do that to everyone else.
I’d love to hear your stories about how you handled telling those around you - and if there’s anything you wish you’d done differently. Thank you.