MS is such an invisible disease. Very few of the symptoms can be seen or detected by others, and only if they are really paying attention, they may notice tremors, inability to walk, balance impairment, speech problems, or bladder/bowel issues. Many MS symptoms cannot be seen, such as pain, spasticity, numbness, itchiness, fatigue, vision problems, dizziness, cognitive problems, or emotional changes.
Most of the time I do not look disabled. I am blessed to be able to move around easily, only getting noticeably fatigued with severe heat or exertion. Symptoms such as spasticity or pain respond to medication, exercise, and rest. Very rarely have I lost bladder control in public and even then I was able to go home to get cleaned up and change clothes.
To look at me, you can’t tell that sensation is diminished in my feet and ankles. My proprioception is affected and I dare not stand with my feet together and close my eyes for risk of losing my balance and falling. I am careful how I place my feet on the ground to avoid the ‘kissing the sidewalk’ symptom which I’ve experienced on a number of occasions. Those face plants are no fun and can cause extreme embarrassment and pain.
When invisible symtoms are hard for others to see…or hear.
Last weekend one of my invisible symptoms - impaired balance - caused a public disruption. I was in the airport in Newark, New Jersey, when TSA agents at the security checkpoint repeatedly asked me to stand in the body scanner machine. I’m not sure what went wrong the very first time I stood there. But in repeated attempts in the machine, the agents complained that either my feet were not far enough apart, or my hands weren’t high enough, or I wobbled which made the image blurry.
I tried to quietly but clearly explain that I have a neurological condition that impairs my balance. I said that I have a minor disability—I have MS—It is extremely difficult to stand perfectly still for so long. None of this seemed to matter or spark any understanding with the growing crowd of agents.
The more times they sent me back into the machine, the worse the situation got. I became fatigued just trying to stand still which made me wobble more. If I placed my toes, but not my whole foot on the yellow shoe prints, I was yelled at to place my feet all the way on the farthest points of the painted image. But if I did that, I needed to hold my hands lower to try to stay stable. If I lifted my arms farther above my head then my hips would sway back and forth, constantly compensating for my over-exaggerated, feet-wider-than-hips and less than stable stance.
It was all I could do to keep my cool so that I could just get on with proceeding to my gate. I was frustrated knowing that if I’m in motion it’s much easier to stay strong and keep going. If I have to stand still for any length of time, I become terribly fatigued. Even walking very slowly is harder than taking full, smooth strides and can trigger spasticity.
What others take for granted is reality for someone with MS.
Not being able to stand perfectly still in a position that everybody else makes look so simple is mildly infuriating. It’s situations like these that make me annoyed that I really do have this neurological condition. I hate being ‘less than’ I once was.
Years ago, it made sense to be upset when I was losing my ability to stand from a seated position, or that I was blind, or that I couldn’t use my arms and hands to perform on horn or piano. I’ve had so many symptoms come and go that I have to stop and think about what hasn’t happened in the past 10-15 years.
But since I’m doing so well now, and look great, MS annoys me when I can’t easily explain when I do need a bit of consideration. I simply can’t do EVERYTHING that a normal healthy person can do.
Maybe if the security screening procedure required everybody to stand on one foot, pat their head and rub their belly while reciting the alphabet backwards, then maybe, just maybe, everybody else would feel as ridiculous and annoyed as I did on Sunday when I was asked to stand perfectly still for 8-10 seconds in an awkward position just so it could be determined that I wasn’t carrying any firearms or explosive materials.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.