“I was 20 years old, working in Paris, loving life when I was hit with various strange symptoms. I woke up one day and had difficulty walking, lack of coordination, and numbness on the left side of my body. I went to the doctor after a few days of ignoring these symptoms and he said he thought it was just a trapped nerve. He sent me for a blood test and CT scan to check it wasn’t something more. Both of these tests came back clear but over the next few days, I experienced a new symptom that was, what I can only describe as, a burning/tingling sensation in my left arm. I went back to the doctor and he said he thought I had brought on the new symptom myself because I was anxious and stressed. During this time, I had done a lot of Googling and Dr. Google confirmed my concerns.
I decided to ask the doctor if he thought it could be MS, but he said no. He said there was no reason to suggest it could be MS and I was too young to have the condition. My doctor told me I was too young to be diagnosed with MS, yet MS is most commonly diagnosed when people are in their 20’s and 30’s. I wasn’t convinced, so he said he would send me for an MRI scan to give me ‘peace of mind.’ Over the next few weeks, my symptoms slowly went away but I still felt generally unwell. A few weeks later, I went for my MRI scan. I was handed a folder with all my brain pictures in and was told to book an appointment with a neurologist. I decided to fly back to the UK to see a neurologist. I went to the neurology appointment with my mom. The neurologist took one look at my scans and swiftly diagnosed me with MS. It’s so important to advocate for yourself, so if you feel like something isn’t right, make sure you push for answers.
After my diagnosis, I spent a week back at home feeling very sorry for myself and only speaking to those closest to me. Eventually, though, I decided the only way to get through it would be by turning my diagnosis into a positive. I went back to Paris to finish my internship and I’m so glad I did. It was a great distraction! Over the next few months, I started looking on MS websites to find things I could take part in or people to talk to. I decided to sign up for a skydiving fundraising event and I’m so glad I did – it gave me something to focus on. I decided to tell the world about my new diagnosis through my fundraising page and I was overwhelmed by the kind responses I received.
Soon after my skydive, it was time for me to go back to university to complete my final year but it was also time for me to start my MS medication. This was hard. My medication gave me a number of side effects, including stomach pain, flushing, itching, fatigue, and weight loss. This made it really difficult for me to enjoy my time at university, as I struggled to find the energy to do what my friends were doing. However, things did get better and I got back to being more positive. During the first 6 months when I was diagnosed, I was constantly met with comments like, ‘You look so well’ or ‘You don’t look like you have MS‘ or ‘But you don’t look ill.’ Now, of course, these things are lovely to hear, but it was clear that people I knew expected me to look somewhat different because of my MS. Whereas, in actual fact, I looked – and still look – exactly the same.
Even now, people are always shocked when I tell them about my diagnosis because it really does hide itself so well (for the most part). I have also been met with comments like, ‘You’re too young to have MS’ and I’ve been asked if I will need a wheelchair. Comments like this have made me realize people have a real lack of understanding when it comes to MS and there really are a number of misconceptions and stereotypes.
Multiple sclerosis is a chronic condition that affects the nerves. The condition can make it harder to do everyday things, like walk, talk, eat and think, but it’s unpredictable and different for everyone. In other words, there is no ‘normal’ example of what MS looks like and this, of course, can be confusing. Because of my experiences and what I had learned about MS, in March 2019, I decided to start a blog to try and tell my story and help others. I noticed there weren’t many young people in the media or on social media talking about MS and I wanted to change that. I had also joined a number of support groups but most people in them were at least 30 years older than me. Over the years I have worked with Roche Healthcare, BBC, The Huffington Post, and many national and international charities to share my story as a young person living with MS and to encourage others to do the same.
Over the summer in 2019, I was contacted by some other young people living with MS who told me they were very grateful to hear another young person talking about the illness. I got to know these people individually and I found we all had very similar questions and experiences. I then saw a gap in the MS community and decided to start my very own support group. My support group is called MS Together and it’s for young people, aged 18-35 who live in the UK or Ireland and have been diagnosed with MS. There are now just over 400 of us and we offer virtual meet-ups (including quizzes, murder mystery, bottomless brunch, bingo, educational talks, mindfulness evenings, and more), in-person meet-ups (when possible), fundraising events, and general support. You can request to join the group here.
What I want people to remember is MS comes in different shapes and sizes, stages, and forms. For some, it happens quickly and for others, it develops over time. In any case, every MS journey is unique. However, when you look healthy on the outside, one of the greatest challenges is explaining to others you actually feel ill, exhausted, or are in pain. If people can’t see you struggling, they can’t imagine something is wrong. Unfortunately, people tend to judge others by what they see alone and decide whether they are capable or incapable based on that. This means that the life of someone suffering from any ‘invisible’ illness can be filled with insensitive encounters. I now use my blog to help raise awareness of not only MS but a number of other chronic and invisible illnesses as well.
You can’t control being diagnosed with any illness, but you can control how you respond to it. My hope is, one day, people with invisible illnesses will no longer have to explain themselves and justify their struggles. Spreading awareness is the only way to create a more accepting, understanding world. We need to make the invisible, visible. The more awareness and understanding there is of MS and other invisible illnesses, the easier it will make life for me and so many others.
I am currently doing really well. My medication is working, I have just started a new job working for an MS charity (MS Trust), and I will be running the London Marathon next year. Although I wish I had never been diagnosed with MS in the first place, it has allowed me to have some incredible experiences and meet some amazing people… and for that, I am grateful. No matter what life throws at you, there are always some positives you can take away from that experience and I wouldn’t be who I am today without everything I have been through.”
This story was submitted to Love What Matters by Amy Thompson from Manchester. You can follow their journey on Instagram and their website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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