After disclosing my MS in a pretty unabashed fashion in a national broadsheet (The Independent) last November I thought I was done with 'coming out' about my disease. Then this summer a BBC researcher got in touch via the MS Society. They were recording a series for Radio 4 entitled 'Coming Out', about living with and disclosing difficult truths about ourselves, they'd read the article and wondered whether I'd be interested in telling my story for their series.
It seemed a good opportunity to again raise awareness of MS, a disease I think is still little or misunderstood by the general public. In particular it was the difficulties of living as a young and relatively physically unaffected MS'er that I wanted to highlight. These days MRI technology can diagnose MS much earlier when a patient may only be experiencing mild symptoms. In your 20s and 30s when career and relationships are being built developing MS seems to call your whole future into doubt. On top of this new deep uncertainty about that most base of foundation, your health, there are serious decisions to be made about who to tell, when to tell and how to tell.
It is this decision and its consequences that the programme is focussed upon. I was aware that compared to most MS'ers I disclosed to my employer and to my friends very early. My friend Andrew had dealt with things very differently, in part because his symptoms on diagnosis were far milder than mine, and so I suggested to the BBC that it would be good to get Andrew involved too.
In the programme Andrew and I explain how we dealt with ‘coming out'. I hope it illustrates there is no single ‘right way' to tell people about your MS and that being personally ready to do so is the most important thing. You need to be prepared to deal with others' reactions which you can not control.
In many situations the fact of my MS seems irrelevant and I still leave my MS out of the equation for a while; the decisions about when and how to tell people continue. But I think the programme's producer wanted its positive tone to be encouraging and helpful to those who are considering telling people about their MS for the first time. It is I hope thought-provoking for all listeners to think about why MS'ers struggle to disclose their disease and what this says about prejudice in our society.
The films I've been working on, featured within the programme, will be launched in early 2012 on shift.ms This beautifully written and filmed story, will raise awareness of MS and be an innovative and compelling resource for all MS'ers but especially those debating how to deal with their diagnosis and whether to ‘come out'. There is a lot more work to be done in supporting people with MS psychologically and also in ensuring they remain within the work force whilst able. Hopefully with progress in these arenas coming out for future generations of MS'ers need not be such a dilemma.
Follow Cathy John on Twitter @lickingthehoney and on Facebook, or through her popular blog lickingthehoney.org Cathy won the MS Society Media Coverage of the Year Award 2011 and has written articles on MS for The Independent. She has recently been commissioned by the University of Northumbria to write a story evoking the uncertainty of living with MS and is an advisor on Gallop and Belong two groundbreaking films about being young and diagnosed with MS to be launched early 2012 – see www.shift.ms