While perusing social media recently, I came across another individual who suffered from a chronic illness. Like me, she is disabled. Also, like me, she can still sometimes walk and do many other activities, until she can’t. She is disabled, yet has moments when she is very much able. She used the most perfect phrase for her situation: she referred to herself as “dynamically disabled." I can’t think of a better way to explain my own disabilities!
The word “dynamic” means “characterized by constant change, activity, or progress” and that describes my abilities perfectly.1
I have moments where I can walk, talk, and think clearly but I have many moments when I can do none of those things, or can only do one. At this point in my life with multiple sclerosis, my symptoms are very much unpredictable.
Sure, I can tell when I’m more likely to have problems. If it’s too hot out or if I am under a lot of stress, chances are I am going to be having difficulty. However, I’m much less likely to know when I am going to actually be feeling well. Even if I do feel good and functional, I never know how long it will last. I’ve started so many days feeling decent to only have it last for an hour or so. My symptoms and their severity seem to be ever-changing.
Being disabled with MS is complicated
I became officially considered disabled at the age of 35. That was difficult for many reasons, but among them was the fact that I didn’t really look like what I considered disabled to look like. It’s many years later, and I still feel weird explaining to people that I am disabled. Chances are if I’m in a conversation with someone about it, I’m well enough not to look the part, which leads to a little bit of embarrassment on my end. The phrase “dynamically disabled” makes me feel a bit more accepting of my own situation because it does a great job of describing what occurs in my day-to-day life. It helps remind me that my level of disability is legitimate.
Legitimacy is important
While others may look at me and still not understand how I can be called “disabled,” learning to accept it myself has been a more important problem to address. Being disabled and yet not feeling that you belong in that category is a tough spot to be in. It brings an additional level of shame. Not only have I felt shameful for not being able to work, but adding to that, I felt shameful among other disabled people because I didn’t feel I was disabled enough.
I’m sure that doesn’t make sense to many people reading this; after all, who wants to look and feel disabled? Of course, I don’t wish I was worse off, but being in my situation makes me feel a bit alienated and alone. I’m extremely lucky that I occasionally have good moments but I sometimes find myself feeling bad for enjoying them.
Dynamically disabled is still disabled. I think it describes my situation perfectly. I can occasionally participate more in life. I wish I could do it predictably enough to work but I can’t. Sometimes people like me have good moments, but that doesn’t mean that they still don’t have difficulties. That person who stands up from a wheelchair to reach something or someone who parks in a handicapped space but looks fine maybe someone like me. Being disabled doesn’t mean you are completely disabled 100% of the time, it means that we never know when or for how long our bodies will fail us.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
How often do you use assistive devices to help manage your MS?