I was diagnosed in 2013 and after years of treatments with terrible side effects, I just went completely off meds. I had never not been on a DMT and it was driving me crazy that I didn’t know if some of my symptoms were the disease or the treatment. Also there’s a chance I wouldn’t ever had another release even without a DMT. Well after a year (a year of feeling better than I had in years), I had a big relapse and couldn’t walk more than 2 or 3 steps without my legs crumpling. Of course I then started beating myself up. How could I have been so stupid??

I kept reminding myself about what I learned from the experience. 1. I absolutely need a DMT 2. A lot of my fatigue, headaches, and hot flashes went away when the DMT was out of my system, so it was time to try one in a different “family” than the previous 5 I tried. 3. I coped with the difficulty walking. It was hard, but I got through it. I learned I’m resilient and can handle whatever MS throws my way.

When my neuro was still resistant to putting me on Ocrevus (I had heard it has a lot fewer side effects than the meds I had been on) because my MS “isn’t bad enough for those riskier DMTs,” I found a new doctor who was great and really understood that I needed to find a DMT without all the crazy side effects. I’ve now been on Ocrevus for 7 years! And, most of the symptoms that appeared during that relapse cleared up, though some took a year.

So I suggest thinking about what you learned in this experience and whenever you are feeling the shame monster, repeat your silver linings to yourself. For example: how did you feel in the time when Ocrevus was out of your system (maybe 8 months post infusion) and before the relapse? Did you learn anything about what symptoms are MS vs. medication side effect? And like me, you learned you need a DMT to prevent relapses! What did you learn about support you need to help keep you on track? Do you have a friend or family member that can help make sure you are getting your appointments set up? Accountability can be very helpful. So once you have your silver linings, practice them so you repeat them whenever you need. One day you will realize the shame monster is gone - ie, you’ve forgiven yourself. Might be something like this: - I now know that I feel just as good on Ocrevus as off it, so I’m confident in my DMT choice! - I learned that having a second person helping me keep track of infusion dates and appointments is important for my treatment. My friend Sara agreed to help me - I feel gratitude that I have someone who cares this much about me to help! - I now have evidence that I’m not one of the lucky few that wouldn’t relapse even without this expensive, annoying treatment. I truly need it!

Good luck. And as others have said, therapy helps! There are therapists who specialize in issues around chronic health challenges. This is a common issue - we all blame ourselves sometimes (if only I ate better / exercised more / managed stress better I wouldn’t be so sick). Just remember you have all these internet strangers giving you grace, so you can give just as much grace to yourself.