Disclosure seems to be the theme of many MS strands at the moment, so I thought I’d add my two-penn’orth. My only advantage is greater hindsight as I was diagnosed with MS 28y ago. More than half my life has been lived with the diagnosis and it is fair to say that it has influenced every single aspect of my life. Recently, I started to reflect on what that has meant.
Some insights are very gratifying and others are very hard to even think about. MS has alternately made me a much better person and, at times, quite the arsehole. I want to blame the bad times on the MS but I think it was in me and, at best, I can only involve MS in my rotten deeds and not blame it all on it.
However, there are things I am extremely proud of that offset the episodes which make me cringe and I take comfort in the knowledge that there are far more of the former than the latter. I’m 52 now, so a fair amount of time has passed and it turns out that the cliche is true. Time is a great healer.
What I am really saying to you is that it takes time to come to terms with your MS. I wouldn’t say I welcome it into my life but I am comfortable with its presence. The issue with disclosure, especially when it is all new to you, is that you need to jump ahead a bit so that you can ensure it is not frightening to others.
While you remain afraid of your own MS – and it makes perfect sense to be frightened of it; like skydiving is naturally concerning the first time – you’ll find it extremely hard not to communicate that fear to other people. Whether they be someone you fancy going out with or working for it will be the same, your fear leaks out. We’ve all seen it in others or experienced it ourselves. You can’t help but betray your anxiety. I am still petrified of bloody wasps (what IS their point?) and swat and wave at them. I then get some smart alec saying, ‘They can sense your fear’. This may be true, but I’m petrified of the damn things and it is a very rational fear in my mind.
So MS and disclosure? What useful addition to the discussion can I make? It is blunt so brace yourself. You need to get a hold of your MS and how it sits with you. Until you can stop being afraid of your MS it is very difficult to avoid communicating that concern to others. Whomever they may be.
I resolved from Week Two to just plough ahead with life as I always have. If something has scared me (apart from wasps) I have confronted it head-on. Skydiving, big drops when skiing, hard climbs on the bicycle, scary climbing moves, dealing with aggressive idiots etc. the more you do this, like anything, the easier it becomes. In this case, it is managing your own fears.
So I urge you: get therapy of some kind. See a professional, chat it over with your best friend, join a group (shift.ms or esupporthealth.com), go bungee jumping, come out using a video on LinkedIn (As my mate did recently. Six mo. after her diagnosis she owned it so no one else could put their spin on her story) but confront it, accept it and cure your fear of it because ‘it’ ain’t going anywhere.
I’d like to thank my friend Kay for reminding me of something obvious I missed. Both she and I took it upon ourselves to give truth to another cliche: knowledge is power. We both got head down into researching and understanding MS from a patient perspective. This had led me to starting theMSguide.com in March of this year and more patient ambassador type roles. That is the really unexpectedly good and fulfilling thing from ths bloody disease. The idea that I can use my experiences to help others is very gratifying.
( this piece also appears on the Barts blog here: https://multiple-sclerosis-research.org/2021/10/disclosure/ )