Getting Through Uncertainty and Fear After Being Diagnosed With MS

I will feel good again, I will feel good again, I will feel good again.  It was the mantra I would say to myself that kept me going when I was filled with fear and uncertainty after my sudden MS diagnosis.

I’d felt good before, and I’d obviously had MS a long time by the time I was diagnosed. So I’d tell myself this new information and these symptoms would be temporary punches to the gut. I’d recover and feel good again. I had to replace the statement that I was saying to myself nonstop, “I have MS.” Can I still do this? Should I be doing something else to feel better, to improve my life span, and quality of life? I don’t know what to do, and I could be unintentionally doing something that’s making it worse.

In yoga or at the gym, I’d realize my self-talk was consumed with, “this is affecting me since I have MS. I can’t do this as well or at all because my nerves are damaged and balance is harder.” My body temperature rising makes me lose feeling in my feet or makes me clumsier. I wasn’t sure if these symptoms are normal, temporary, or making my MS worse.

I obsessed and was constantly thinking about how I had MS. Because I thought about it all the time, I assumed my friends or coworkers also saw my MS when they looked at me. It surprised me to learn from friends that they forget I have MS, because my MS was so, so prominent in my thoughts all the time. It was terrific feedback. I had intentionally tried not to talk about it all the time to keep it from becoming my identity, but it consumed me. I felt successful when I learned their perception of me was not overshadowed with MS.

Telling people what was a limit for me and what wasn’t was challenging. I felt like they didn’t trust me that I wouldn’t break, and I felt they didn’t believe me when I said I couldn’t do something. They saw me active and looking normal. Numb feet, tingling limbs, or just not feeling quite right aren’t visible.  There’s a fine line between being supportive and coming across as not believing it’s real and something I need to tend to differently. I can’t will myself through the symptoms. The body doesn’t care how much I want to do something. It only responds when I respect its limits and build capabilities to expand what I can do comfortably or with a consequence I can live with.

Along with the mantra of “I will feel good again,” I’d give myself a pep talk.  “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helped me to stay open to lessons, believing they’re around us all the time. I trusted that when I’m ready to learn the lesson I need, the opportunity will be there for me.

It was years before I one day realized I wasn’t internally thinking about my MS all the time. It takes the time it takes. It’s a loss that doesn’t go away. Once I was able to change the things I could and look at how this gave me permission to improve my life, it lessened the feeling of overwhelming loss for what I thought my future held. And it’s empowering to feel normal again. Different but normal.