“MS has taken my life in a whole new direction”
I was diagnosed with MS 15 years ago now, and felt mixed emotions. I felt partly relieved, as at least I knew what it was. I could put a name to it and move forward.
But at the same time, I also felt fear and anxiety. For me, the most difficult thing to come to terms with was the uncertainty.
I’m a planner and an organiser. I like to know what’s going to happen next. You can’t do that with MS.
Coming to terms with my MS diagnosis
Having a good neurologist who understood me and understood my situation really helped. He believes in shared decision making and we can have two-way conversations. I felt like I was being heard and respected. It gave me a sense of control over my MS and how I deal with it.
I’ve also learned a lot through patient advocacy and meeting other disabled people. I’ve started planning for what I might need in the future. For example, I’ve looked into more accessible house adaptations and mobility aids. That’s made things easier for me. At least now I have some idea what I might need to do in the future.
MS and mental health
MS has affected my mental health. It’s particularly impacted my feelings about my relationships, career and finances. I worry about the future a lot. I rely on my parents for various things, but they’re in their 70s now and they won’t be around forever.
I’ve been to counselling in the past. It’s not offered frequently enough to people, particularly when you’re first diagnosed. There’s so much emphasis on the physical symptoms, but people aren’t really offered mental health support.
MS has really made me into the person I am today
The neurologist I have now was the first healthcare professional to ask how I was coping. At the time, I wasn’t doing so well. My advocacy work meant that I was often surrounded by people who were quite physically disabled. I hadn’t realised the impact that had on me.
Cultural attitudes to MS
I think there’s also cultural aspect surrounding MS and mental health. I’ve done work in the diversity space and come across examples of this.
For example, within Asian communities there can be quite a lot of stigma and prejudice around MS and chronic illness in general. And this can make it harder to seek support.
I’ve always been a very driven and focussed person, and that made it harder to accept that I needed help. I thought “I’m a strong person I should be coping.”
I feel lucky
MS has taken my life in a whole new direction, I’ve met new people and have been able to do brilliant things.
It’s made me change my way of thinking and it’s made me more appreciative of my health when it’s good. It’s also brought me closer to my mum and dad.
I feel lucky. I have a brilliant neurologist and MS nurse who’ve helped me become an informed patient. And I have so much support around me (especially my family) to do my health advocacy work. MS has really made me into the person I am today.
