Emily's Story


My health journey started about 10 years ago when I was still in secondary school, so I will try my best to sum it up in one blog. I started to notice what I could only describe as a burning sensation when I touched my skin. It started on my arms, then the backs of my legs and finally across my torso, where I couldn't even have a thin t-shirt touching me. At the time I didn't think much of it and my 15 years old self thought no further than it being something to do with a weird virus. A few years later I lost my sight in my left eye overnight and after heading to hospital I was diagnosed with Optic Neuritis. Again, at the time I didn't think much into it and just remember being really pissed off as I had spent the past six months rehearsing for a dance show in Disneyland Paris and ended up having to have someone guide me off stage at the end of each number so I didn't run into someone in the wings. I was nothing short of embarrassed! My sight came back after just over a week but the pain lasted a while. 


Here I am (far left) with family and no vision in my left eye. You can see from the outside no one would have known!

Fast forward a few more months at a dance class, I started to feel a pins and needles sensation in my left foot, which slowly spread up my leg and soon turned to numbness. It was when my mum picked me up that I noticed the sheer look of dread on her face - it's worth me adding in here that she is an Oncology Nurse Specialist so unbeknown to me, she had some idea of what was happening as she had been doing her own research without my knowledge.

A trip to the Neurologists and an MRI scan, the word Multiple Sclerosis was thrown at me. Again, my teenage self had no clue what it was and on strict orders from my mother I was told NOT to Google anything. After further tests including more MRI scans, lumbar punctures and neurological tests, I was told that although I was showing a lot of symptoms in line with MS and some small lesions on my MRI scan, they were skeptical due to my young age and the majority of my tests coming back normal. 


Here I am at a friend's 18th party. I was still on crutches and was too embarrassed to say what was happening that instead I pretended I had twisted my ankle.

Meanwhile, whilst I was going through my tests under the Neurologist, I started to get swelling in my finger joints. It got to a point where simple things like opening shower gel in the morning or holding a shopping bag became impossible and nothing short of painful. After being referred to a Rheumatologist I was officially diagnosed with Rheumatoid Arthritis and I felt relieved to finally have an official diagnosis. Eventually I started on the immunosuppressant drugs Methotrexate (which I am still taking 10 years on) and they hoped that this would also help with my neurological symptoms. I am pleased to say it did!

I was in my first year of University when I started on my medication and because nothing is ever easy, I had my fair share of side effects. Gum disease, migraines, mouth ulcers and shingles (yep that was fun!). Quite clearly lack of sleep and too much booze didn't help my symptoms so I had to learn the hard way. I would text my mum from Uni to update her but being so far away meant there was only so much she could do. It definitely helped with her being a Nurse but I think everyone has that one person who they depend on and she was mine. 


Here's a photo of my hands during a typical flare up that I'd send her.

I would be lying if I said that everything I went through physically didn't affect me mentally. There would be days when I'd be so frustrated and fed up, others when I would pretend I didn't have it and do all the things I knew would just make my symptoms worse. I was however so fortunate to have incredibly understanding and supportive family and friends around me to keep me going. In a weird way I think that growing up with it all and having it through so many big milestones in my life, has just helped me to become the person I am and adjust as best I can. I've always promised myself that what I have would just remain a small part of me, and not become me and I think that's important for anyone suffering with anything to remember.

There's so much more I could talk about but for now I hope this gives a good overview of my story. Although there have been some really tough and low moments, when I look back at this 10 year period of my life I have graduated from University, built a successful career in London, travelled, bought my first house and recently officially launched Makai. I have also been in a happy and supportive relationship for 5 years and found someone who puts up with every part of me (thank you Matt). I have done all of this by knowing that having the confidence to talk about what I have when I need to, but not letting it become more than it needs to be, has allowed me to get where I am. For anyone reading this who is going through their own journey, I hope my story will give you the confidence to keep going.