Losing a Health Care Provider as Someone With Ehlers-Danlos Syndrome

In 2001, I was 18 years old and I knew something wasn’t right with me. I suspected, at the time, that it was something to do with my lower back and only my lower back. I hadn’t put together the “growing pains,” the frequent sprains, the early-life dislocations of my shoulders and the sensitivity to touch and exercise. I had been focusing almost completely on my lower back. I thought the subluxation of my hip had been my back going out. That couldn’t have been further from the truth.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I began looking for a diagnosis in 2003 after the birth of my daughter. I remember getting sick with the flu two days after she was born and staying that way for months. No one could tell me what was wrong with me. The doctors I had back then just plied me with medicine and suggestions for diagnoses, but no one could pinpoint it. At some point, the widespread pain across my body was too much and they sent me to a rheumatologist.

The old man, cranky for having to be at work at all, looked at me and said, “You have fibromyalgia. It’s a diagnosis of convenience.” He then walked out of his office, leaving me with the feeling of absolute horror. My mother had been diagnosed with fibro and all I saw in her was pain. It was constant. She died in 2008.

I had been seeing several providers at that point and had multiple surgeries. There was so much going on in my body and I still couldn’t piece it all together. I remember finding it strange that our local medical investigator’s office would call me to tell me that her muscular structure had been decimated by her high and constant pain. I’d never heard anything like that before, especially considering her cause of death was hypertensive heart disease.

As it turns out, she didn’t have fibromyalgia. She had hypermobile Ehlers-Danlos Syndrome and, we suspect, vascular Ehlers-Danlos as well. I found this out at my appointment last year with a very acclaimed local geneticist. He spent roughly three hours talking to me, examining me and documenting my symptoms and family history. He was probably one of the most interested-in-me doctors I’d ever met, or so it seemed. He was thorough, sympathetic, kind, listened well and was very inquisitive about every one of my symptoms across my entire life.

He diagnosed me with hypermobile Ehlers-Danlos. I took that diagnosis to my primary physician’s office and was recently able to have it put formally onto my chart with my CNP. My primary had been on leave for over a year as of my last appointment with my CNP. Normally, I would be panicked more than I already was. But my CNP made everything better. I’d been seeing her for several years and she had been someone so critical in my care and my life. She was understanding, kind, investigative, inquisitive, maternal and open to treatment options. She was a diamond in the rough in the chronic pain community. I was lucky to have her.

I keep saying “was” because I found out yesterday that at the end of June, she will no longer be practicing due to family precedence. I understand that, but she won’t be my CNP anymore. She won’t be anyone’s CNP. I’m one of at least three Ehlers-Danlos patients she sees. I know we all feel the same about her.

Today the weight of this has hit me completely. I’ve reached out in every direction for help. Who will help me with medication management? Who will help me treat my many co-morbidities? Who will listen to me after already having a good grip on my dictionary-sized medical history? Who will address my need to get tested for POTS and small fiber neuropathy? Who will do what she did? I don’t have any answers right now.

Right now, I feel an incredible sense of loss. It took me so many years to find my primary care physician and my CNP. I went through so many doctors who didn’t care, who didn’t listen, who told me horrible things and who ultimately cared more about their opinions than they did about properly diagnosing me.

One of those doctors told me to disown my family and divorce my then-husband. That same doctor refused to treat me after learning I’d gone to another hospital and received a diagnosis (I had four gallstones and needed urgent surgery) from another practitioner. His refusal to treat me and refusal to move my surgery date up nearly cost me my life. He denied it and still does to this day.

In my experience, doctors like that one are more prevalent than providers like the ones I’m losing. They make the search so much more terrifying, like a dauntless mountain ready to roll giant boulders over us at any second. We’re terrified that we’re going to end up losing our life-saving medications. We’re terrified that we’re going to go unheard. We’re terrified that we’ll ultimately end up dying an excruciating death due to medical neglect.

Providers like my primary and my CNP are so rare. They are the exception, not the rule. Each time we lose one, the search brings us across more who treat their patients like burdens. Each time we lose one, the search brings us across more who would rather play musical pills than maintain their patients’ already-working medications. It brings us across more who would rather talk over their patients than listen. It creates a feeling of hopelessness and dread that this could be it for us.

That’s where I am today. I feel very hopeless. I feel the dread of the impending search and I feel the fear of never finding another amazing provider again. I’m trying my hardest to avoid the “what if” game, but it seems the game is winning. The biggest blow to me has been the realization that there are no Ehlers-Danlos Society registered providers in my state. Not one. My state isn’t on their list. Granted, there aren’t many EDS patients here, but you’d think we’d at least have one or two providers. You’d think.

Today I’m reaching out to my fellow zebras in my local community. I know each one of us with a chronic illness and chronic pain knows this search and it scares us. I hope each of us getting ready to search or currently searching has a wonderful support system. We need it badly if we’re going to get through this. As we’ve seen over the past year with patients losing their providers due to opioid medication, the search can cost some their lives and can be too much for others. We need to uplift one another and reach out when we need help.

Usually, I’m the one people reach to when they need resources. Today, I’m the one needing to reach.