I was diagnosed with MS 20 years ago, while I was at college in California.
One morning I woke up and my hand had gone numb, but I thought I’d just slept weirdly. The next day my other hand was also numb, and I got what I now know is the “MS hug”.
I had no idea what was going on. I went to see the campus doctor who sent me onto a neurologist. Luckily I got seen really quickly, they did some tests and an MRI which found I had several lesions. I didn’t really know what that meant. This was in the early days of the internet so I had to go to a computer lab to look it up.
My doctor told me that the results were normal, and I was so relieved, but then he went onto explain that he meant “normal for someone with MS”! I couldn’t believe it, it hit me like a tonne of bricks – maybe that comment’s why I became a comic!
Living with MS
I handled the diagnosis OK. Part of me was in denial, and part of me was thinking “I’m going to be in a wheelchair” – it took a while to come to terms with it. Finding community really helped. I got involved with the MS Society in the US and met some amazing people. I’m so grateful to them, it really helped to have people who really cared, and who I could go to for reliable information. I also started my own group for people in their 20s and 30s, and we’re all still friends. The fear changed. I’m still afraid to a certain extent about things like losing my mobility. But whatever might happen in the future shouldn’t change how I live now – I can still make the most of life.
When I’m tired I start to get more tangible symptoms. The main one I have to deal with is fatigue, which is hard because I like to be productive. Sometimes when I work out I get a bit shakey, and I have to regulate my body temperature.
In the past, I saw myself as not worthy because of my MS. I personally limited myself, and thought no one would want me. I also dealt with depression in my 20s. I live more fearlessly now, and I want others to be empowered to live their lives to the fullest. I know not to say “no” to opportunities now. I think that having MS made me braver.
I moved to London from the US at the start of 2020, and recently joined the MS Society’s research network. I’m really passionate about research because it will lead to the improvement of people’s lives. In my life I’m very practical and do very purpose-driven things, so supporting this makes sense. When I was diagnosed there were like three different medications, things have already come such a long way.
Comedy and podcast
I’ve always loved comedy, and I’ve always been the funny one in my friendship group. I told myself that by the time I reached 40 I was going to give it a go, so I signed up for a class and started doing stand-up! I perform comedy around London regularly and talk about my personal experiences on stage, including MS.
My new show is called “nice try” because it’s about times when things have tried to get in my way, like MS – but I’ve not let them.
This year I took the show to Brighton Fringe and I'm currently at Camden Fringe! I’d rather give the funds to people who really need it, so the money I raise is going to the MS Society and Refuge. My purpose is ultimately to serve others. I’ve done a lot of fundraising and sponsored walks and I was an ambassador for MS Society in USA.
I’ve also started a podcast called “More Than Work”, which came out of me working all the time and getting burnt out. I’ve been known to work 80 hours a week, and I’ve often centred my life around work. I want to tell stories of people that are doing other things which add value to their life.