It’s the Worst MS Symptom, and I Face it Daily

MS means that I could wake up tomorrow blind in one eye, or both eyes. MS means that I could wake up tomorrow and be unable to walk. MS means that I could wake up tomorrow with one of my limbs feeling as though it is on fire. MS means that I could wake up tomorrow with vertigo so bad that I can’t get out of bed. With MS, there is a certain likelihood that at any moment, I may face a relapse and whatever fresh hell that the relapse exerts on my nervous system. I may or may not fully recover from the symptoms of a relapse, but these relapses will always leave behind brain damage that may result in future disease progression. This, in a word, is terrifying.

The symptoms that MS causes are all terrible. However, I am coming to learn that the worst MS symptom is fear of the unknown. While MS has so far only caused me fairly minor symptoms, relatively speaking, it has done a number on my mental health. While I try to focus on being grateful for what my body can do today, I would be lying if I told you that my mind didn’t regularly wander off into the dark forest of fear. The knowledge that at any moment, I may face my next relapse makes me feel as though I am living life with my head under the guillotine.

I will do everything in my power to keep MS relapses at bay, from taking a cutting edge and aggressive disease modifying therapy (DMT), to supplementing vitamin D, to eating a healthy diet and exercising, but I know that notwithstanding these steps, relapses will still come. I won’t know how my MS will present. I won’t know when my MS will present. All that I know is that, eventually, MS will rear its ugly head again.

I hate admitting that I am afraid. We are socialized to view fear as weakness, and I certainly view this fear as weakness. Nonetheless, I am admitting to you that I have MS and I am afraid of it.

The common consensus seems to be that it takes approximately 2 years to come to terms with an MS diagnosis. One month into my diagnosis, I find it hard to believe that I will eventually come to terms with this disease. Coming to terms with the disease doesn’t mean that you won’t still live with the worst MS symptom, fear. It only means that you will learn how to live your life in spite of it.