Fearing My Providers After Medical Neglect
I have EDS (Ehlers-Danlos Syndrome), hypermobile type. I was diagnosed with it in 2018 after having been wrongfully diagnosed with fibromyalgia in 2003. My mother, by all accounts and evidence, also had hypermobile EDS. This is the first thing I tell any provider I meet with. Why? Because it is the all-encompassing medical condition in my life. Most of my other conditions are comorbidities of my EDS. I say “my” EDS because no two of us who suffer from it are exactly alike in our symptoms. We call ourselves “zebras” for that reason.
Last year, early in the year, my back went out. I didn’t know why and I was more focused on treating the pain than anything. I had become used to it happening as it usually happens at least once a year. This lasted for a month, however, when it usually lasted for only a couple of weeks before going away. It also didn’t go away completely. I was still feeling pain from it randomly. In late June, I stepped off of a sidewalk and felt a small, brief pinch in my lumbar. I didn’t initially think anything of it. I really should have.
For four months last year, I was unable to walk without assistance. I was in ever-increasing pain that was almost constantly at a 10 on the 1–10 scale. I was unable to lay down and, therefore, was unable to sleep in any position other than sitting up. My then-primary provider refused to order the only type of imaging that I could do and, instead, ordered a normal MRI. The MRI tech, when I attempted to lay down and ended up screaming, became angry and told me to relate to my provider the fact that I could not lay down and, therefore, could not have a regular MRI. She suggested that I ask him about sedation or using an upright MRI machine instead. For months, I begged my provider to order that imaging. The local spine clinic couldn’t see me without current imaging and even they begged him to make the call. He refused.
From what I can tell, he refused because I had already reported him to the state board of nursing for refusing to listen (he was pushing to use steroids which actually progressively damage our already-short collagen stores as EDS patients; I already mentioned to him that steroid injections not only did nothing for my pain but often made it worse). He had carelessly mentioned using one of his other EDS patients as a guinea pig for that same treatment course. His reasoning? Muscle strength can decrease the likelihood of subluxations and dislocations in EDS patients. He, without doing the proper research or listening to us when we presented contrary research, decided that the best way to do this would be to utilize steroid injections. He did not account for the permanent side effects of those steroids. He did not pay attention to the damage to our collagen.
Since my report, he listened even less. Finally, the spine clinic doctor ended up calling in the upright MRI himself as my provider refused. By this time, it was too late. I had been left sitting, unable to walk or function without serious help, for three months. By October 31, the mass in my spine was as big around as a soda can. I did not know this at the time. Two weeks later, I was hospitalized. The fentanyl that the paramedics had administered (my first experience with fentanyl, by the way) was doing nothing to the pain, which I thought was going to actually kill me. My blood pressure had spiked with both numbers in the hundreds. One provider I saw when I finally decided to find a new primary had blatantly ignored my dangerously high BP, my sobs of pain, my inability to sit still and even me telling her that I knew that I was injured. She wrote in my file that she did not believe my EDS diagnosis was accurate as (according to her) “EDS is not painful”. My therapist ended up speaking to this woman and was infuriated. The provider told my therapist in no uncertain terms that she believed me to be a liar, a drug seeker and overly-dramatic.
Once I was admitted, it took almost two weeks before imaging was able to be done.. and even that imaging, a CT Myelogram, was beyond excruciating. The morning after that image, it was discovered that I had a ruptured disc in my spine that, over the course of two weeks, had grown to twice the size it had been measured at on October 31. I needed an emergency surgery.
That surgery saved my life and my ability to walk. I was facing paralysis without it. My neurosurgeon personally came and spoke to my husband, informing him of how severe the rupture was and how bad the situation was as a whole. I am currently healed at the incision site, but I am still feeling pain either from the surgery or a possible new herniation at the site. We are unsure yet because of the probability of fluid at the surgery site.
Since this incident and the numerous providers (one being my former primary) who not only refused to listen but refused to acknowledge me for whatever reasons, I now have severe anxiety when talking to any providers. My current primary is an amazing woman, thankfully, but there is still bad news on that front. She is leaving at the end of March. To top that off, the man I was supposed to establish with in her place is also leaving at the end of March. I have no idea who I’m going to see for primary care at this point.
I’m also legitimately terrified. When my current primary told me she was leaving and made the suggestion of the other provider, I had one question for her: “Will he listen?” She touched my arm, exhaled slowly and said, “Yes.” I believed her. Now.. I don’t know what to do. I feel such palpable fear when I think of a new provider. Most providers don’t know what Ehlers-Danlos is (even my current primary didn’t, but was willing to learn about it; most aren’t willing). On top of that, having to recount what happened to me last year (including the dramatic muscle loss due to the nerve being compressed and my inability to walk) is like reliving that trauma each time. I’m hoping against hope that whoever I see will listen.. but, now, there’s the fear: what if they don’t? Yes, it was there before last year, but this is different.
Now, so many providers in the area have told me through their actions that, not only are they unwilling to learn and listen, they are willing to risk my life to maintain their own pride. That is terrifying to me. This is not the first time I’ve had a provider do that to me. This happened in 2003 when I had gallstones. My primary told me horrific things, refusing to acknowledge that I could possibly be in that kind of pain. It took me going to a separate hospital’s ER and getting an ultrasound to find out that I had four rather large gallstones. I ended up needing an emergency surgery to remove my gallbladder because my then-primary had scheduled the removal so far out that, from what I was told, I would have died if I’d waited for it. As it stands, the surgery I had was urgent enough that even two more days would have done me in.
My question to myself and the world is very simple now: How do I overcome this fear? I know I need medical care and a good, solid team behind me. I know that I need providers to listen and hear what I’m saying. I know that I need providers who, if they are not familiar with EDS, are willing to listen to my EDS symptoms as well as read up on what it is. I need a team who is aware that they cannot treat my EDS and cannot cure it. I need a team who understands that they will be treating comorbidities of my EDS. I need a team who understands that the best I can hope for in this life is going to be maintaining the status quo; making sure it doesn’t get worse. I don’t know how to even go about this anymore. How do I grow trust from me to them?
My rule with people and providers is simple: The truth, however brutal it is, is the best way to get to a solution. I make it a point to be very straightforward and specific when I communicate. But, if the provider is unwilling to listen, unwilling to learn or simply believes that, due to my age/weight/illness history/etc. etc., I am “faking” or “can’t possibly be this sick”.. what then? I’m tired of coming up against providers who make themselves into someone who is not only unwilling to help or treat me the way I need to be helped and treated, but someone who is going to label me a liar because their pride is more important than my life. These kinds of providers are why my mother died young. Yes, I can say that full well knowing that it is the truth.
How do I proceed? Medical care is not optional for me. It is a necessary part of my life.. but how do I trust when trusting has almost cost me my own life?
Edit: Since I initially wrote this story, I have gained and lost five providers due to retirement and quitting. Each new provider requires an establishing appointment, a new medication contract and garnering rapport. This takes time and things can easily get lost in medical record transition. Each move to a new provider can also cause an EDS patient to lose medication and care coverage. As an example, the last time I lost coverage was due to my primary taking an impromptu vacation. He was out of office for over a week. I ended up not having any access to my medication and subluxed 6 of my costoid ribs which took months to heal properly due to the inflammation and swelling that occurred. Continuity of care is critical and a loss of it can be damaging or worse to an EDS or chronically ill patient.
