Mia is 21 years-old. She talks to us about her MS journey and how social media helps her connect with the MS community, and call for change.
After years of not knowing, and experiencing relapses without answers, I was diagnosed with highly active relapsing remitting MS at 18. My body had experienced MS symptoms since the age of 12. So I’d got used to simply ignoring the weird things my body would do.
I was silent for a while. I felt like being open about my diagnosis and disability was putting myself at risk of discrimination and vulnerability. I started university a few months after my diagnosis and I tried to keep it a secret as I never wanted to be judged.
I wondered if knowing more about MS when my symptoms started might’ve helped to piece things together. And I might’ve fought for a diagnosis instead of accepting being called a “hypochondriac” by my GP.
The power of social media
So in December 2020 I made an account on Instagram where, for the first time ever, I spoke openly about my MS. This account not only raised awareness for MS but it helped me accept and understand my diagnosis, and how I was truly feeling.
I used this account to talk about my good and bad days. And it saw me get through two treatments, Ocrevus and Lemtrada. It was also a massive support to me when my health declined in the summer of 2021 and I was taken off Ocrevus.
Dealing with the bad and the good
In the January of this year that account was hacked and I was heartbroken. I felt sick knowing a stranger had access to my vulnerability and had control over my coping mechanism and relationships.
Due to stress being my biggest trigger, I began to flare up and I could feel my health spiralling. After a hard few days I decided to continue documenting my journey. I made a new Instagram account as I knew I couldn’t be silent on MS.
Speaking so openly and being vulnerable about my MS was a tough decision. But now I couldn’t imagine life without my account. Instagram doesn’t always show reality. And I wanted to create an account someone else could look at and feel less alone. Or have a place where I could help others fight for a diagnosis. I want to do something that could’ve saved 12-year-old me from feeling so alone and scared.
Strength in our community
Starting a new account also proved to me how passionate I feel about the MS community and raising awareness of MS. I started a petition for free prescriptions for people with long-term conditions which reached 10,000 signatures in less than a week. MS isn’t on the medical exemption list in England right now. So I felt like this was another needed step towards raising awareness of MS and support. With a disease that’s often ‘invisible’ it’s so easy to associate ourselves with being invisible.
We are seen and our experiences are valid. Talking about an MS diagnosis isn’t easy. And for some people it’s a private matter. However, never stay silent out of fear. We deserve to be heard and feel seen. Message me on Instagram - my DMs are always open!