I Thought the Medicine Was Supposed to Help
You started experiencing some weird issues. Maybe your vision was blurry, or legs were weak, or your arms were numb. Perhaps you had some burning pain or some really strange spasms. You went to numerous doctors and underwent countless tests and finally, you were diagnosed with multiple sclerosis. Sometime after that, you eventually started a medication to help with the disease.
The misconception about MS medication
The thing is, you’ve been taking this medicine for a while, but you still have some problems. You still have a lot of days where you don’t feel great. When you complain about how you feel to your friends or family, you get this frustrating response: “I thought that medicine was supposed to help”. There are many misconceptions about MS, one of the most common is about why we take our medications.
Creating confusion
Now, I’m obviously talking about disease-modifying medications (Ocrveus, Tysabri, Copaxone, Avonex, etc.), not something you would take for an individual symptom (like Provigil for fatigue). I don’t know about you, but I often share a picture of me getting my infusion once a month on social media (I see many people that do). When we are taking such a big step in life, we often share that with people. A huge portion of the population is used to a certain dynamic when it comes to medication. You take it and it solves your issue.
You have a headache, take some ibuprofen and a little later, the headache is gone. Have a cold? Take an over-the-counter remedy and it at least improves the symptoms enough that you can function. Even with diseases like cancer, they see people getting chemotherapy with the goal of removing the tumor. So, when seeing us take a medication that involves an IV infusion or injection, it’s no wonder they expect us to be fine afterward. When we aren’t fine that gives them a sense of bewilderment. Why are you taking it if you are still experiencing problems?
Why do we take disease-modifying medications for MS?
There are folks taking these medications who often don’t understand this concept either. It’s easy to question why we are going through all this trouble if it feels like it’s not working. That’s why it bears reiterating that the majority of the disease-modifying drugs available for MS are not taken with the intent of helping our symptoms or making us feel better. We take these medications to slow down the disease.1
I try to explain to friends and family that this type of medication is really taken as a preventative measure. Our disease-modifying treatments are there to help slow down the disease, to help prevent future exacerbations, and to help limit our level of disability later in life. From a purpose standpoint, our treatments have more in common with a vaccine for COVID, than they do with chemotherapy for cancer. We do not take them to feel better now (we may even feel worse at times because of them), we take them so that we do not feel even worse later in life. This is such a key concept that I wish people understood. It’s also why, if you’ve been diagnosed with MS, even if you feel great, it is still recommended that you be on a disease-modifying treatment.
Fighting frustration
Our treatments not making us feel better can be a huge source of frustration. Not only because it makes us question why we are taking them, but because those around us can’t quite grasp why we are taking them if we don’t feel better. When others question why we are taking it, it can increase the doubts we may already be harboring. Explaining and remembering that the damage that’s been done already, for the most part, can’t be fixed, yet is key to understanding MS. Right now, the best we can do is to try to prevent more damage from happening. The future is bright though, and someday we may have a way to effectively regrow the damaged myelin, but for now, we are simply trying to stop more from being destroyed.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Devin
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