From mental health and relationship challenges to finding the best treatment options, there’s so much I wish I knew 20 years ago.
When I was diagnosed with multiple sclerosis (MS), I thought I was as prepared as anyone could possibly be. My grandfather had MS and my family and I were his caretakers, so I felt I knew the condition well.
Because of my family history, I considered myself more knowledgeable than most when I was diagnosed myself.
Over 2 decades later, I have now been living with MS longer than I haven’t. Looking back, I realize that there was so much that I really didn’t know about this disease.
Here are some things I wish I knew back when I was diagnosed.
MS can cause much more than mobility problems
My impression of MS when I was diagnosed was that it could impact me physically. I thought that, eventually, maybe I wouldn’t be able to walk.
My biggest concern was that I might end up in a wheelchair or bedridden.
I continued to pursue a career as a software engineer because I thought that I could still do that from a wheelchair, if needed. I now know that MS can impact so much more than mobility alone.
I would go on to experience issues with pain, fatigue, mental health, and with my cognitive abilities.
MS can cause pain
My first issues with MS involved my legs being numb and weak. I fell a lot, and so while the falls certainly inflicted pain, I had no idea that the condition itself could cause other forms of pain.
About a decade and several exacerbations later, I began to experience severe burning pain in my legs, arms, and upper back.
I encounter pain in some amount every day. Sometimes I can bear it — other times it becomes so bad that I can’t think straight. It consumes me, can be relentless, and can cause me to lash out.
Living with pain for so long can really affect who you are as a person, and I know that has been the case with me. While knowing that pain was a possibility wouldn’t have saved me from it, I think it would have been helpful for me in regard to reporting it to my neurologist.
MS can impact us cognitively
When I was diagnosed, I thought that being someone who worked with his brain for a living would be helpful and allow me to keep earning a living, even if my mobility decreased. I found out the hard way that MS can have a severe impact on your ability to use your brain.
I began experiencing short-term memory loss. I also found myself getting confused, often, as well as having difficulty problem-solving and following directions.
This began to have a massive impact on my career. I started missing deadlines and the quality of my work suffered.
Eventually, I met with my boss and team members to explain what was going on. One of these co-workers admitted that if you were to look at the code I’d written recently and compared it to work I’d done even 8 months prior, it was like it was written by a different person.
My plummeting cognitive abilities ended up becoming a big reason I ended up disabled.