My unique EDS needs make it crucial to advocate for myself

It’s been an interesting couple of weeks as I recover from broken ribs and an injured diaphragm. I’m trying to be patient with the healing process, but that’s not something I’m good at! I’d hoped to begin physical therapy (PT) for my diaphragm and sore core muscles, but because broken ribs don’t typically require PT, I’m running into some trouble.

For most people, a broken rib simply requires time to heal. But because of my Ehlers-Danlos syndrome (EDS), bone or joint injuries often result in damage to the surrounding soft tissue structures, as well. I thought PT might help with the muscle trauma that’s being exacerbated by my EDS, so I texted my physical therapist.

I’ve been seeing this therapist for 15 years; she knows me well and has a strong understanding of EDS. Although I was her first EDS patient, she’s since seen others and has done a lot of research to educate herself about connective tissue disorders. When I asked her if she thought PT could help with my sore core and diaphragm, she said “absolutely” and suggested I get a script so I could come see her.

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If only it were that simple! Because broken ribs typically don’t require PT, I’m struggling to get a script. It’s not anyone’s fault; it’s nearly impossible for anyone in the healthcare industry to have in-depth knowledge of every rare disease, including EDS, and how these conditions affect patient care and treatment.

A colleague mentioned that our employer-sponsored insurance may allow for direct approval of PT, especially since my therapist wants to see me. While I work to figure that out, I will continue to advocate for myself, politely and respectfully, so that I can hopefully get the therapy I need.

I’ll also continue to educate others about EDS, our needs as patients, and how best to support us as we recover from injuries. The more people I educate, the greater the chance that they’ll be better equipped to assist the next rare disease patient they meet.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.