Blacklisted from Physical Therapy

By: Loolwa Khazzoom, Founder, Dancing with Pain

October 15th, 2009 • Patient AdvocacyPrint Print

Seven years after my chronic pain journey began, following non-stop struggle, I landed in the office of Nina — a doctor who took me seriously, treated me like a human being, cared about my wellness, and didn’t fight me in my attempt to heal.

Not only that, but she was willing to go the extra mile. She applied herself and took on the health care system with me, to secure the medical attention and treatment I needed — attention and treatment that is commonly denied yet critical for diagnosis and healing.

For the most part, I did the footwork, and Nina signed the referrals. We also tapped our combined knowledge to figure out what other tests I might need and what other methods might help, and we brainstormed together about how to work the system, when it was not cooperative.

From the outset, I was adamant about getting physical therapy. In the hands of Joanie, my superstar physical therapist, I began improving by leaps and bounds. In a short period of time, for example, I went from barely being able to lift my arm to lifting five pound weights.

There was just one problem: My health insurance. See, according to American health care ideology, our injuries are supposed to be healed within four visits. If they are not, we are clearly duping the system, seeking attention, or otherwise looking for a little extracurricular fun at the local rehab center.

Whereas my Canadian friend Aviela got an entire year of physical therapy – several times a week, I might add – until her wrist was completely healed, I was supposed to be all better with a few scraps thrown my way.

Not only that, but as much as I loved working with Joanie, and as much as I was improving, everything was approached in piecemeal fashion: I’d get four sessions allotted for my shoulder pain, and during that time, we were not allowed to work on anything else. Then I’d get four sessions allotted for my ankle pain, and lord help us if we touched my knee.

Meanwhile, it was a no-brainer to me that all my pain was inter-connected. I didn’t have the sophisticated neuroscientific understanding that I have today about how things work, but my intuition told me that whatever was going on was systemic:

I knew that my body had been traumatized far too many times and that it had essentially shut down in response. I knew that I needed a methodical, integrated, whole-body approach to physical therapy, to give me the chance to heal.

Besides, as I knew without a doubt from kindergarten, “The hip bone is connected to the (beat) thigh bone…” So I fought for it. I wrote letters. I spoke with gatekeepers. I laid out my vision for a holistic approach to healing and justified the rationale to the health insurance powers-that-be.

Somewhere during the process, Nina suggested bringing on a “patient advocate” to help plea my case to the health insurance company. Barbara, however, proved to be more of an enemy than an advocate.

“You’ve had this condition for so many years,” she said in a phone call I will never forget, “that we consider you to be disabled. Our assessment is that you cannot at this stage be rehabilitated.”

“But the reason I have had this condition for so many years,” I replied, “is because it’s gone untreated. It took me all those years to find a doctor who believed me and responded appropriately and got me into physical therapy. Now that I am in physical therapy and getting proper treatment, I am improving by leaps and bounds.”

I’m not sure how she looks at herself in the mirror each morning, but somehow Barbara managed to simultaneously acknowledge that I was rapidly improving, as evidenced by my physical therapy reports, and yet insist that I could not have more access to physical therapy because I was a lost cause.

She then blacklisted me from any more physical therapy. Ever.

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