Disclosing My MS

This week Aoife shares her decision to disclose her MS journey to family, friends and the wider community.

Aoife Kirwan
16 Jun 2016

In times like these, sharing seems to be the 'in' thing. With the popularity of social media it is hard to escape sharing (and often over sharing). Sometimes it's a picture of someone's perfectly presented breakfast, a photo to support a cause and sometimes it's a funny cat video! Whatever the share, whatever the reason, people are connecting and interacting with each other. We exist in a time where sharing has become a very easy thing to do. So you would think that disclosing an illness, sharing that information might seem easy. If only it was as simple as pressing a few buttons and hitting post. 

I am generally quite a private person, I don't document my life on social media but I do share the odd picture, more often I check in when I am in an interesting place, but that's kind of the extent of it. On the other side of this, I am a blogger - I blog about my own life, my own experiences, and my own illness. In my blogs I rarely filter myself, which is quite odd when I am quite fussy about what I post elsewhere. One side of my social media life is in complete contrast with the other.

So why do I share my MS journey?

Quite simply, I want to help other people. I feel that human connection is an incredibly powerful force. When I was diagnosed I didn't feel I had that. I felt quite alone with my feelings and at the time I think I could have used something like the MS and Me blog space to feel I wasn't alone. In those very early days I didn't know anyone who had MS and it would be quite some time before I met someone similar in age to me who had it. I felt a huge need to fix this. I live by the saying 'Always leave things a little better than you find them' - leave things a little easier for the next person who comes behind you. Use your journey to lessen the load of the next traveller. Reading a story similar to your own can be very empowering and I wanted to be able to help people in that way. I was THRILLED when the opportunity came up to share my story and to blog with my fellow MS and Me bloggers. I feel that we create a space where we share the delicate details of our lives and MS journeys, so that others can feel connected and become part of a community. 

At the time of my diagnosis I was in college and experiencing symptoms that seemed crazy to me and anyone who knew me. These symptoms were affecting my performance in college. So when I ended up missing time and possibly needing extensions - I had to disclose my condition to my lecturers. I didn't need the extensions in the end, but I did need my ducks in a row, just in case. It also explained my late mornings and extended lunches on occasion. Disclosure to family and friends happened organically. I am close to my family and I think I had semi-prepared them for the diagnosis before it happened. So they were informed and involved every step of the way from symptoms to diagnosis. They were and continue to be incredibly supportive. I can't imagine what it would be like to live with my illness without including my family. Some people may not need it but I need the support of my family, they are my first call when I am having an 'MS' day and need a little extra help. 

My friends had seen the affect MS had been having on me for months. They shared my journey up to my diagnosis and they continue to be a great support to me when I need them. Other than that we live our lives as normal, sharing, liking and commenting on each other's lives through social media - just like all the younger people who don't have someone with MS in their circle. 

As most people tend to associate MS with people who were much older than me I was a little hesitant to disclose my illness very publicly at first. That feeling quickly passed and talking, reading, sharing issues can sometimes normalise them. You can become desensitised to things and I think this can be used positively. Being open about having MS in my early adult life was a way for me to combat stigma around sharing that diagnosis. The visibility of young people with MS isn't exactly high and I wanted to challenge that by getting more young people talking, to build a network and a young community. A community where our concerns matter. A community which can strive to make change, to make it easier for younger people who are yet to embark on the journey we are on.

Disclosing my illness is no longer something that I can opt in or out of, it's right there in black and white if someone were to google my name. However, in my case I don't see any problems with disclosing my MS regardless of how public or private it may be. Life goes on regardless of what you do. You could choose to disclose or not to disclose your illness as you will still need to keep moving forward, because that's the only choice there really is. Deciding whether or not to disclose your illness can change from situation to situation and there is no 'one fits all' answer. My take on it, is that there is no need to move forward in isolation. Disclosing, sharing and joining together with others in the MS community has been hugely beneficial to me in so many ways.