Why I No Longer Fear My Future With Multiple Sclerosis

Living with an illness you didn’t have any symptoms for a few years ago is very surreal. Sometimes, people who are diagnosed with a chronic illness have had symptoms for years prior to their diagnosis and so their diagnosis serves as a way to validate how sick they’ve felt. I was diagnosed with relapse remitting multiple sclerosis (RRMS) in October 2019. In the years before my diagnosis, I wasn’t aware that I could potentially have a chronic illness – there was nothing that stood out to me in my life that would make me seek medical help or a diagnosis to explain what was happening to me. That was, until I was involved in an accident a year prior to my RRMS diagnosis that left me with post-concussion syndrome.

In October 2018, I was involved in a go-karting accident that left me with a bad whiplash injury and what my general practitioner described as a ‘mild concussion’. Following the accident, I had a slew of symptoms that didn’t seem to be getting any better. I was dizzy throughout the day with vertigo, and I had bad light sensitivity and couldn’t look at screens (my phone and TV included. I felt emotionally volatile and would cry without warning. I also struggled to sleep for months due to excruciating pain in my neck and head. At night, my head felt ‘raw’ and I just couldn’t get comfortable or shake the pain.

At this time, I was completely housebound and on long-term sick leave due to my symptoms. My doctors told me very little about what post concussion syndrome is and why my concussion had developed in this way. All I knew was that people with a history of mental illness were more likely to develop post-concussion syndrome from a concussion than others. As someone who has a history of anxiety and depression, I concluded that this was the reason I had developed post-concussion syndrome.

Wading through the first few months with this ‘invisible illness’ was incredibly tough and very isolating.

When no one around you can visibly see a manifestation of your symptoms, it becomes very easy to feel like it’s all in your head, even with an official diagnosis.

I think the worst thing about those months was feeling that the pace of my daily life had slowed down significantly, while everyone else’s continued as normal. I felt like I had been forgotten and left behind. And the reality is that I had. I was missing out on work promotions, income, time with friends, pursuing my sporting goals, amongst other things. All while watching my family and friends progress in their lives. The flip side of this is that I gained a lot of time, and time is very valuable. Being in full control over my day (in spite of my activities and capacity for doing things being limited), meant that I was able to delve into podcasts focusing on functional medicine, neurology and brain injury. I became a well-informed advocate for myself and focused my time on finding different ways to improve my condition. This was significant for me, as I quickly realized that my doctors were ill-equipped to deal with my condition, and were unable to advise me using the latest knowledge about brain injury recovery. I took matters into my own hands and started my own therapies at home.

Around five months into having post-concussion syndrome was when I started to experience drastic improvements due to the vestibular, physical and neuroplasticity exercises I was doing at home. I was finally having days where I had zero symptoms.

Fast forward to today, and most of the time I don’t have any post-concussive symptoms at all unless I am extremely exhausted or stressed. While I’ve made a great recovery from post-concussion syndrome, I now live with my RRMS diagnosis. While I didn’t have any symptoms leading to my diagnosis, it now makes sense to look at my developing post-concussion syndrome as a sort of RRMS relapse or response to the accident I was involved in. It’s almost a relief to see that they’re interrelated, because I’m determined to find a way to heal from my RRMS similarly to how I’ve made such a good recovery from post-concussion syndrome.

The difference in being diagnosed with RRMS is that I feel my time advocating for myself during the worst months of my post-concussive symptoms has made me realize my own resilience and ability to meet adversity without fear. I am not fearful of my future with RRMS, in spite of neurologists having a nihilistic view of RRMS disease progression.

It’s hard to free ourselves from fearing for the future, especially when we’re living with chronic health conditions, but it is one of the most powerful things we can do for ourselves. In a book I read about autoimmune conditions by Dr. Terry Wahls, she emphasized the importance of having a strong sense of purpose in your life. I think that finding my purpose in creating meaningful illustrations and advocating for better women’s health has led me to feel more positively about my future. I am also a strong believer in the idea that knowledge is power. I found that the more I read about my illnesses, the more I felt empowered to take control of what I could and create the best life possible for myself. That said, I think it’s important to emphasize the fact that our experiences with illness is a spectrum, dictated by illness severity as well as our access to time and resources. The underlying principle I want others with chronic illness to remember is to try your best to understand what you can and cannot control. This distinction has helped me to not diminish my energies on things I have no control over, while honing my attention, care and energy into what I can control.

I recognize that perspective, coupled with determination, is a gift worth cultivating. In my experience, it has allowed me to face my RRMS with an openness, determination and willingness to learn that I didn’t realize I had in me until my 2018 accident. I now realize that the proper term for what I’m experiencing is ‘post-traumatic growth’. It doesn’t make living with chronic illnesses easy, but it gives me the ability to put my health and well-being first and advocate for myself and others like me.