A Need for Better Educational Practices When Diagnosing MS
We’ve all seen it. Someone who is newly diagnosed with multiple sclerosis (MS) wondering why, months after starting a disease-modifying therapy (DMT) for MS, they are still experiencing symptoms. Or maybe someone who has had MS for a while and just started a new, possibly more aggressive DMT is frustrated that it’s not doing anything for their older symptoms that have been sticking around. Maybe you know the answer, or perhaps you’re not entirely sure. Either way, the fact that people are asking these questions speaks to a pretty significant problem in the world of MS, if you ask me - poor educational practices for newly diagnosed patients.
Are doctors taking the time to educate patients?
In my own experience, and from the countless diagnosis stories I’ve heard over the years from others living with MS, many doctors/neurologists don’t, for one reason or another, take much time to educate their patients about the disease they were just diagnosed with. It often seems to go a bit like this: after someone starts experiencing their first major bout of symptoms, they see their doctor who suspects “MS” and orders a bunch of tests.
An overwhelming amount of scary information
Since their doctor didn’t really explain what MS is too deeply, they go home and ask Dr. Google about it. Naturally, this brings up an overwhelming amount of scary information that, considering the stress of the situation, is just too much to try to take in. A couple of weeks later, the test results are in, and when they see their doctor, he/she tells them that they have MS. Their doctor tells them that MS is not fatal but is chronic, so they will have to choose a medication to start taking, based on a few booklets for 2 or 3 DMTs.
I only had 3 treatment options
When this happened to me, I was given 3 options. Granted, there were not as many DMTs in 2010 as there are now, but in hindsight, there were obviously a lot more than 3 out there. But what did I know? I was still trying to get a basic understanding of what MS even was! The 3 booklets I was sent home with were full of complicated medical information, and at the time, it all felt well-beyond my comprehension. So, rather than choosing a DMT based on what I thought would “work” better, I made my decision based on the needle sizes of my options because, at the time, I wasn’t a huge fan of injections.
A huge, hopeless maze
This common story highlights the issue I brought up at the beginning of this post. Newly diagnosed patients don’t always receive a lot of education about MS and the available treatments. Expecting people to be able to learn how to manage MS on their own effectively would be like sending someone into a huge maze and expecting them to be able to find their way out without the help of a decent map.
I didn’t fully understand the point of a DMT
I assume the majority of people living with MS would say that the point of a DMT is to reduce the number of relapses an MS patient will have in a year. While I knew this when I was looking over those 3 booklets my neurologist sent me home with, I would say that I didn’t actually understand what that meant, not really.
What does MS "remission" mean?
I think it’s important to remember that most people, at the moment that they receive their diagnosis, don’t have much (if any) medical knowledge, let alone a detailed understanding of the nature of MS. For example, I heard relapsing-remitting multiple sclerosis (RRMS) and assumed that this meant that any time I was experiencing a symptom, I was “relapsing” and that “remission” meant I had “gotten over” a relapse and was symptom-free. Therefore, a DMT was supposed to completely clear up my symptoms so that I could enjoy a long and symptom-free remission between my limited relapses.
I thought my DMT wasn’t working
That would be nice, wouldn’t it? But RRMS doesn’t exactly work like that - but again, what did I know? I was 20 years old. All I really knew was that I wanted to get back to hanging out with my friends. Months after I was diagnosed, I still had a few symptoms sticking around, so I concluded that my DMT wasn’t working.
The reality was devastating
It took me a while to figure out that “relapsing-remitting” didn’t exactly mean what I thought it did, and it took me a little longer to learn how this disease actually works (at least how we currently understand it to) as well as what the role of a DMT actually was. I feel like the moment I came to this realization was just as devastating to me as the moment I found out that I had MS. All my expectations regarding this disease and how it would affect my life were not based on reality. I thought I knew how the maze I had been dropped into worked, but in actuality? The map I was following throughout the beginning of my “travels” was all wrong.
Watching an explanation from Dr. Aaron Boster
I think there are a lot of important things about MS that someone who is newly diagnosed should know. But, what’s probably the most important is what the point of a DMT is. I recently watched a video by Dr. Aaron Boster (who I definitely suggest you look up on YouTube for his many amazing videos about understanding MS), and he did what I would consider the best job of simplifying what the goal of a DMT is.
Understanding DMTs through a birth control example
Basically, he compared DMTs for MS to birth control. He explained that you don’t take birth control to get rid of the kids you already have, you take it to prevent having any more. When talking about DMTs, you don’t take a DMT to get rid of symptoms you already have, you take it to prevent new symptoms from appearing. Obviously, I’m paraphrasing, but it’s so true, and had I heard that when I was first dropped into the maze that is life with MS, I probably would have taken a much different path and experienced much less disappointment due to my unrealistic expectations.
Do doctors need better resources?
I understand that doctors have a lot of patients and not a whole lot of time to spend with each of them, but I’m not sure if that’s a very good excuse for someone not receiving a basic understanding of their disease. However, I’m definitely not saying that it should fall solely on a doctor/neurologist to educate their patients on the inner workings of an autoimmune disease like MS. That would be unrealistic. But I still think that it’s a doctor’s job to ensure that their patients leave the exam room knowing what’s going on. Maybe it’s time for doctors to have a better collection of educational resources to give to their patients? Resources that will spend a lot more time explaining what MS is, how it works, and what can be expected of both the disease and the medications used to treat it.
Taking advantage of technology
I’m not talking about some little pamphlet from a pharmaceutical company; I’m talking about something that takes advantage of the technology of the 21st century. Something like… a simple card with a link on it to a series of educational videos about MS, because when someone has just been handed a life-long diagnosis, the last thing they probably want to do is sit down and read a book about it.
Videos might be easier for people to digest
The vast majority of people have access to the internet and a series of YouTube videos (for example) would be a lot easier for most people to digest and would also ensure that everyone newly diagnosed with MS had easy access to basic facts about the chronic illness that they are now living with. Basic facts that could greatly help develop people’s understanding of things like how MS works and what the role of a DMT is, which would go a long way in helping to manage expectations.
Did your receive a good explanation about MS?
So, what about you? Do you feel like you received a decent explanation of what MS is and how it’s treated when you were diagnosed, or did it feel rushed and lacking? Do you have any ideas on how professionals in the medical community could better address this problem? Share your thoughts below!
Does your employer provide workplace accommodations due to your MS?