I ‘came out’ as gay to my family in my teens. It was a surprise to some; it confirmed for others what they always thought (my affinity for Doris Day movies was NOT for the Cary Grant cameo and yes, I was infatuated with Steffi Graf) and other people I lost contact with. Little did I realise that my ‘coming out’ would help me later on in life when I was diagnosed with MS. I’d walked the fear-paved path before, disconnected from my family and friends. Some of the disconnection was all mine as I struggled to find the words for what I was going through. I took myself away to the city, looked for people like me, built connections with other souls and gradually came home in myself. But when I returned, the greatest surprise was the welcome, the embrace from my family and friends when I did reveal my glorious self.
When I was first diagnosed with MS, the questions rose again. Who do I tell? How will they react? What will they say? When do I tell them? How will I tell them? What do I say when they react to me? Where are the other {young}people with MS? All the questions I had coming out built a resilience I never appreciated until I had to tap into it, again.
In the past, I’ve said that disclosing I have MS to people is like coming out. Yes, in that I’m making myself vulnerable and telling someone something about myself that is different to the typical human experience. And no because I’ve learned the hard way that difference is something humans notice and being noticed can be dangerous. Thankfully, it is here that the power of community and patient empowerment has made all the difference; despite the danger I wouldn’t have it any other way.
I couldn’t find other young people with MS to talk to when I was first diagnosed so I set up a Meetup group. Since 2010 we have been meeting monthly in the IFI Cafe in Dublin, every time creating a safe space for people newly diagnosed (6 weeks was the newest person) and the more long-time MSers can get together and talk. There is no obligation, the only expectation is that you be yourself and allow others the same respect.
This for me is what pride is about- celebrating my unique human experience while allowing others to do the same. As patient pride/patient empowerment progresses and the other stakeholders move over to allow the patient at the table, the situation for people with MS is improving. But we must remind ourselves of the person with MS who today is in an inadequate healthcare facility or to the person unable to access counselling or to the newly diagnosed person shuffled out of a clinic with just leaflets to hold onto. Visibility is important not just for ourselves but for the people struggling with life with MS, those who will be diagnosed with MS and for better public understanding of this traumatic condition. Being visible isn’t for everyone, we know it is dangerous, but for those who do choose to join the movement, there’s a whole lot of us waiting for you.
The Dublin MS Meetup Group has more than 200 people with MS as members, meets every month in an accessible location in Dublin city centre and welcomes newbies. Join up here: https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/
Check out Emma’s blog https://republicofemma.wordpress.com/ and follow Emma on https://twitter.com/emmadragon
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