The Real Diversity of MS
Multiple Sclerosis is a disease that affects a wide range of people. Folks of every race, gender, and walk of life get diagnosed with MS, so yes, it attacks a diverse demographic. However, that’s not the diversity I’m going to talk about here. When it comes to MS, there is another level of diversity that needs to be recognized: the severity of one’s disease course. Unlike many diseases, you can line up twenty people who have all had MS for the same length of time and they may all be having a different experience. That level of diversity within those affected by the disease can present a number of challenges to those living with it.
Many of us experience dramatically different courses of the disease
If you’ve ever been on social media or to a support group for those with MS, it becomes quite clear that many of us experience dramatically different courses of the disease. Some people experience pain, some don’t. Some are plagued by optic neuritis, while some never have any visual symptoms. You can even find people that have had the disease for the same amount of time and have taken the same medications and one will be in a wheelchair, while another just completed running a 5K. With Multiple Sclerosis, there is a massive pool of possible symptoms that can be common, but finding people with the exact same symptoms and severity isn’t easy.
Imagine trying to treat a condition where everyone can be so similar, yet so different. Treating multiple sclerosis often requires a “try and see” approach. What works for one person may not work on the other, but the only way to know for sure is to try it. That leads to a lot of frustration on the part of both the doctor and the patient. There are treatments that work for some people, but there isn’t a standard that works for everyone. When you think about something like cancer, you often think about chemotherapy, because it’s widely used and can be very effective in many cases. We don’t really have that with MS because of this diversity. Aside from trying to halt the actual disease progression, you have to factor in the variety and severity of symptoms people experience, and that’s a whole other level of treatment to factor in here, because treating the disease and the symptoms are two related but different goals when it comes to MS. Treating to slow disease progression isn’t done to help the symptoms you already have.
Finding support despite a lack of common ground
Another huge challenge that those with MS face because of the diversity of their symptoms and severity, is when it comes to finding support. One of the key components of any kind of support group is having something in common, but what happens when that thing in common makes everyone so different? You often see a lot of in-fighting and hurt feelings in MS groups because of this diversity. It can be very hard for folks who have something but have it so differently. I’ve seen arguments break out because one person who’s had a relatively easy course of the disease proclaimed their attitude is why they are so healthy, while another person, who’s had the disease the same length of time, but had a much worse course and is confined to a wheelchair, questioned it.
Pushing an agenda
People with the disease forget how different it can be for others. That person with the wheelchair has had every bit as good an attitude as the person with the easier disease course, so it becomes extremely insulting to those who have hard a harder course of the disease. You can sometimes start to see a tremendous amount of pain and anger when those with MS start comparing their conditions, with both sides forgetting just how different we all are. Trying to champion any reason for “success” can be very dangerous when it comes to MS because we are all affected so differently. (On a side note, wow, there are so many people trying to push their reason for success, the way to “beat” the disease. Please just stop, we are all so different, if you want to actually be helpful to someone with MS, just be there for them, don’t try to push an agenda.)
Many similarities but also many differences
The diversity of symptoms and disease severity is something we all need to keep in mind when it comes to multiple sclerosis. There are many similarities, but also many differences. That’s not only one reason it’s so hard to treat this disease, but also why it’s hard to live with it and find support for it. The diversity among us is an aspect that I think too many forget.
May is Mental Health Awareness Month. We want to check in. How are you feeling?