Fitness, Disclosure, and Disability

I’m going to deviate a little from the posts I usually write, and offer you something a bit more personal. I may or may not talk much about research, but wanted to get my experience out there in the hopes it might help others. There will be a family member or two who will think this blog is ill-advised, but so be it.

I went to spin class today, and left a little teary. For those who know me, I cry once a year. I guess today was the day.

What in the world would have triggered such a big reaction? Telling me to keep my cadence up. Someone walking up to me and calling out my cadence in front of the class.

Now before you say, “who does that?” know that this is not about vilifying any instructor and/or their methods. This particular instructor was concerned for my safety and didn’t want me to get hurt. Also, there were four of us in the class and this instructor corrected everyone. It’s not about that.

It’s about having to come clean about why my cadence wasn’t up to snuff. I just said “I have sciatica” and left it at that. Usually I say that, or I say I have hurt my neck. The truth is a bit more complicated.

I have a Chiari Malformation Type I, Hydrocephalus (not syphilis, which someone once thought I said), and a possible mild case of Ehlers-Danlos syndrome. Note that two of the three meet the NIH criterion for rare diseases. Basically, my brain is herniated into my spinal column, which builds up fluids. Some of that is related to my connective tissue being softer than most peoples’. So, the systems of my body hang out and don’t talk to each other well. My body is a painfully awkward high-school Homecoming dance.

The symptoms are subtle. I look nervous. I have no Achilles reflex in my left foot. I can’t drive stick. I don’t know my right from my left and have trouble with basic addition. I can be drifty sometimes. My brain hurts when the weather changes. I can’t do a full push-up, and my elbows fling out to the side when I punch. My startle reflex is comparable to someone with combat-related PTSD (I’m not kidding on that one).

I’ve had surgery to correct the hydro and that has eased up the Chiari. The EDS isn’t too bad – I just sprain and strain more easily than most. I also have a tremor. Having mild symptoms is a good thing, because I can do most of the things I want to do. Martial Arts, mud runs, spin class.

To be fair, there are also some advantages. Flexibility in my fingers allows me to learn instruments with ease. Most jobs requiring fine motor skills were not my forte. I had the opportunity to have cool jobs in a video store, pharmacy, and as a nursing home receptionist, all of which led me to where I am today. I don’t want this to be a pity party.

That said, when I need an accommodation or modification, my motives are often misunderstood. A lot of instructors say, “tell me if you need to modify.” But, that is a loaded question. You see, disclosing is a crapshoot. You’re super vulnerable. What reaction will you get? Best case scenario is that you get a trainer willing to work with you, who asks questions, and makes suggestions based on what you both understand. This is what happened today. But it doesn’t always go down that way, and that can make a person defensive. Some reactions I’ve had to disclosure are:

  • “If you can’t stand the heat, get the F**k out.” (from a coworker at another place and time)
  • “The more you talk about it, the worse it gets. Mind over matter.”
  • Eye rolls and the subtle feeling you’re holding everyone else back
  • “If you don’t do it this way, it’s improper positioning.” Thanks, Einstein.
  • “Just keep practicing and it’ll get better.” Sometimes that’s true, but I’m not going to fix the nerve damage that’s been there for 20 years.
  • “Stop being a wimp and catch the stupid ball.” This one was from grade school, when I had no depth perception and would have a startle response to any ball coming close. This is why I had suicidal ideations in the third grade.
  • “Have you tried (insert miracle cure here)?” I like kombucha as much as the next guy, but it isn’t going to change my genetics.
  • Disclosing makes you an “inspiration.” Really, if you knew me, you’d question that.

I just want to blow off some steam and get healthy – without having a headache, need for yet another MRI, or faceplanting in front a bunch of people. Most of the time, I don’t want to have to share my entire medical history just to get a good workout.

So how can trainers approach this delicate situation? Well, everyone is different and what I would like isn’t necessarily what others would appreciate. Personally, know that I respect your expertise. There might be times when I’m a slacker and need to be told so. You may have an idea I haven’t tried before. At the same time, please respect my knowledge about my strengths and limitations as well. I’m probably just as frustrated as you that I can’t do what everyone else can. I may have talked to a million experts before settling on this approach (either because of them or in spite of them). A subtle “hey, I noticed that you…” is always appreciated. Let’s work together to come up with the best solution.


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