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I'm long gone, word is bond
In the American healthcare system, preventative treatments and overall wellness lifestyle techniques are not made simple or tangible for most citizens. One of the peripheral health services those of us with medical insurance are lucky enough to have is physical therapy. The number of visits and types of physical therapies vary depending on the type of insurance. Nothing comes easy or free in this medical care monopoly.
I like physical therapy. It is a wonderful additive to the holistic challenge of living with chronic illnesses. A quality physical therapist keeps you aligned in your movements, steady with your strength training, and flexible to the point of enhanced mobility. Just like all professions, not all PTs are comparable. Having a background in the fitness industry, many years of being an athletic person, and a lifetime of Ehler’s Danlos hypermobility, I’ve visited my fair share of practitioners who do and don’t know how to handle EDS patients.
Recently, my left hip has been giving me trouble. It’s been slip slid’n and irritating both the nerves and muscles around the joint. I was able to secure PT coverage for up to 6 visits to deal with the hip issue. While I should be in perpetual physical therapy with an EDS specialist, that is not currently something I can afford and insurance would never *gasp* cover preventative *gasp* or maintenance *gasp* therapy. So, 6 visits will have to do. I was planning on milking each of those sessions for the most information and assistance possible. There was laissez-faire attitude happening here! If I’m in the door at 9, I’m ready to hit the work by 9:01. No chatting about the weather or taking breaks between exercises. This broken lady is using every second of the vist to achieve physical goals.
That was the intention. Upon receiving the all-clear from my insurance company and primary care doctor, I called up the approved physical therapy office and made sure that I would be working with a PT who had extensive experience with hypermoblity. “Yes! Our therapists are trained to work on that”. Surprise… they were not.
Knowing that a first appointment with any medical practitioner is mostly background and a bit of trial and error, I took that visit in stride. The therapist said that he was familiar with EDS and gave me a few quick tests before moving onto general strengthening exercises. He was surprised when there were tasks he would ask me to do and I would hyperextend. Not a great sign. After an hour of uneventful exercises and a generic homework sheet, I left. The next appointment, was more disappointing. I was left to my own most of the time with quick check-ins between different exercises. Eventually, he just had me doing walking lunges up and down the length of the room to kill time. The third appointment, I was put with a PT trainee for the first half and just ran through the exact same exercises as before. Zero hip focus. The second half of the visit was with a different therapist. Nothing changed. Same exchanges of “Oh! Wow. You might be too flexible for that move. Use less range of motion”.
That was my last visit. I called and explained to the office manager that her therapists were not actually trained to deal with EDS patients and that their exercises did not address my pain or mobility concerns. She was cool about it and offered an apology.
There isn’t much I can do for pains and continued joint slips on my own outside of strength training. When I have the capacity, I work on my tendon health and focus strength training on the muscles which support my joints. I’m a physically strong person. Years of muscle memory have put me in the fun category of “surprisingly strong”. Those of us with hypermoblity tend to favor certain muscle groups over others. I’m very quad and tricep dominate. While my hamstrings, glutes, and biceps might be sleeping, I’ll squat the heck outta some kettlebells and my pulldown game is wild.
Just because our wrists fold under the lightest weight or our shoulders and ankles give out frequently, doesn’t mean we aren’t strong. It doesn’t mean that we aren’t knowledgeable or capable of participating in physical activities. Everything just has to be done a little bit differently. And to the shock of no one here, all those bad ass individuals throwing weights and running mountain marathons, are compensating in their own ways! They shift, tweak, and avoid so that they are able to maintain their movements. We all have broken meat sacks, different levels, but broken none the less.
As for my hip, or any other part of my body that would benefit from physical therapy, I will keep doing my best to stay out of a doctor’s office. Strength training, light stretching, and lots of following my own boundaries. However, if I end up on the other side of a fancy medical plan or simply move to a location where preventative care is a real option, I will be much more diligent with my choice of physical therapist. Like the motto goes: let’s not waste each others time.
Adrien Tournachon (French, 1825–1903) & Guillaume-Benjamin-Amand Duchenne de Boulogne (French, 1806–1875)