But you don't look like you have.....

Even with MS, I can rack up
an impressive Fitbit count.
When you have MS, health care professionals are very concerned with your gait. Specifically, they want to know how many steps you can take, how quickly, and how steadily. One of the somewhat unofficial tests used to evaluate MS disability is the numbers of seconds it takes you to walk 25 feet (I didn't realize I was being timed the first time I did this, so I dawdled a little. That made my over-competitive self mad, until I realized it left me room for improvement next time. Then I realized I was competing with my own MS, and that however long it took me to walk 25 feet, having misaligned eyes and an MRI full of lesions probably took precedence over that in my diagnosis anyway). Besides walking speed, clinician look for steadiness, balance, dragging or dropping of feet, and width of stance. Basically, they want to see if you can move about on your own reasonably well. This measurement factors into the Expanded Disability Status Scale (EDSS), used to describe exactly how disabled by MS you are at that time. The EDSS focuses strongly on gait and walking ability. The Functional System Score (FSS), on the other hand, covers some of the finer points of neurological dysfunction common in MS, including: difficulty with speech or swallowing, bladder and bowel dysfunction, visual problems, cognitive difficulties, and tremor/loss of coordination.*

My particular variety of MS has not really affected my walking, but pretty much every other possible symptom has emerged at some point. Because of my presentation, I look perfectly able-bodied. I can usually walk long distances, carry groceries, and even go to the gym to lift weights and do the elliptical machine. While I was in the midst of what I later realized was a massive MS relapse this summer I was hiking up and down medieval stairs in Scotland, going up and down to a fourth floor flat every day, and minding the gap all over London. So, functional legs, check.

What MS does give me is a raft of mostly invisible symptoms. I feel nauseated when I'm hot. I get dizzy when I turn around too fast, or pick things up off the floor, or rake leaves or...well, anything. My vision gets blurry, my fingers get numb, and my coordination goes out the window when I'm tired. These are all things that I don't talk about at work, or with people outside my close circle, because I don't know how to explain them without a long lecture on what MS is and how it works, possibly including charts. So I just go on, and hope the feelings will pass. Sometimes they do; sometimes they don't. I also don't want to be see as less competent at work, so that's further incentive to stifle some of my issues

Of course, if had a more visible disability marker like a mobility device, I wouldn't have the option to choose when to out myself as disabled. Sometimes this sounds like a blessing; the ability to use a disabled parking spot would be a life saver at times. But fundamentally I have the privilege to be able to choose when and where I let people know I have a disability. I can pass for normal most of the time. But am I really doing myself, or the MS community at large, any favors by choosing not to identify?

I got my first "you don't look like you have MS" from the transport employee who was pushing me to the car upon my discharge from the hospital this summer. Mind you, I was too tired to walk at the time, had dirty hair, no makeup, track marks on my arms from IVs, and looked like someone who had been in the hospital for four days on the neuro floor. But I still "didn't look like" my diagnosis to him. I looked "too good" to be disabled.

Yet here I am. This is what a person with MS looks like.

I love comments, so let me know what your experience has been with invisible disability, "outing" yourself, and being told you look too good for your diagnosis.

*Totes fun, all of it. 


Popular Posts