CMT and the Importance of Being an Advocate for Myself

CMT and the Importance of Being an Advocate for Myself

It’s been a week of firsts for me. It was an overwhelming week in many ways, although I did learn a few things along the way about myself and the importance of speaking up.

It all started after a visit to my orthotist. My ankle-foot orthotics (AFOs) are causing pain to my left ankle bone. I went to see what he could do to alleviate the pain and pressure. Instead of asking me why I was there, he greeted me by saying that these AFOs are completely wrong for me and that he would never have given them to me. (He is not the one who made them.)

He then told me that “if we do not fix the issue now, you will end up with deformed feet. Then you will need custom-made shoes with braces to your knees. Is that what you want?” He said I needed different braces that probably wouldn’t be covered by insurance. When I said I could not pay out-of-pocket, he decided to look at my existing AFOs. He repeated the comment about ending up in custom-made shoes.

Needless to say, I was quite taken aback by his statements. I left his office feeling deflated and frustrated. My sister encouraged me to contact his manager. I sent an email and spoke to customer service about my appointment.

Advocating for myself was a first for me. I told the customer service agent how the orthotist’s comments had made me feel and that I didn’t want to see him again. They were very nice and supportive, and I now have an appointment with a different orthotist at a different office.

At work, we had a meeting about a plan to move classrooms. My classroom is on the first floor, but there is a possibility of moving upstairs. I spoke up, which I usually don’t do, about why it is better for me to be downstairs. Steps are getting harder, and the elevator does not always work. I pointed out that if I am in pain and the elevator is not working, I would probably have to call in sick. For the first time at work, I advocated for myself based on my disability. That was not easy for me, as I do not like to use my CMT as an excuse for being unable to do something. Ultimately, I will do what my principal says, but I’m glad I spoke up.

It was very hard for me to advocate for myself in both situations. I am glad I did. The outcome may not be exactly what I want, but at least I’ll know I spoke up for myself. I am learning that at times I need to advocate, and there is nothing wrong with doing so.

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4 comments

  1. Cyndi says:

    Good for you! You’re right, advocating for ourselves is hard, but most of us would willingly do it for someone else. I recently spoke up for myself at work after an office rearrangement which caused me to be far from a printer, which I use frequently. I was initially told that there was no money budgeted for an additional printer, but I went a step higher on the ladder and prevailed.

    • Jill Price says:

      Good for you!! It is so hard to advocate for yourself when people do not always see that you have a problem.

  2. David Scarpetti says:

    Orthotists are all different and AFO fabrication and design isn’t standardized. The original braces, despite the ankle rub may not have been so wrong, maybe just an adjustment. AFO fit is complicated. Ideally a brace fabricator and a physical therapist doing a gait analysis should be in the same room but few health insurance systems allow for this. I’ve been through many fabricators, keep up your looking but I wouldn’t waste time trying to pursue one you felt was wrong. It’s probably impossible to prove. Get adjustments and seek out someone who can do a proper gait evaluation.

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