This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago. In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning. We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.
Friends and Family Support
“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”
“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”
Cognitive Fog and Stress
“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”
“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”
“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”
The Unpredictability of Medical Support
“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”
“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”
“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”
“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”
Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect. Please keep sharing your stories and personal journeys with us. By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.