Valerie Rice | April 9, 2021
Here we are, with 2021 almost a quarter of the way over, and I have had more than my fair share of medical practitioners. As most of you know, I am chronically ill, which means I will be sick until the day I die. I have come to terms with this. I have also accepted the fact that I will get the leisure of visiting at least to specialists a month who will help me maintain homeostasis. What I will not accept, however, is suffering. One of my doctors is a pain specialist, which is one of the most difficult, regulated, and oftentimes cruel specialists I see. Ironic, seeing how her only function is to reduce my suffering, but thanks to our war on drugs, my life is a living hell. SO today I want to talk about the ideas of punishing patients and #freetheforgotten.
I have previously mentioned my genetic mutation and the many accompanying illnesses it has blessed me with. In case you forget, click here for a fun review. This next part may get a bit technical, but I will do my best to help you keep up. Ehler-Danlos Syndrome is a connective tissue disorder that causes the aforementioned variety of illnesses, death, and can range from mild to severe. The damage caused by this illness also causes intractable pain. This means that the pain is not something you can just pop a tylenol for and move on with your day. Intractable pain is, by definition: “ severe, constant, relentless and debilitating pain that is not curable by any known means and which causes a house-bound or bed-bound state… and early death… if not adequately treated,” according to the medical dictionary. So it is not something anyone would sign up to have. Luckily, there is a treatment that makes it tolerable. It is a combination of 3 medications. Ready for them? A muscle relaxer, an anti-inflammatory, and a narcotic (percocet being shown to be the most effective. Take this combination 3 or 4 times a day and you, too, can hobble around like a broken marionette.
So, for those of you who have had their ears open for the last few decades know that our society hates narcotics and, by extension, those who use them. What this means for people like me is that insurance companies, office policis, and politics now take precedence over our healthcare to a greater extent than it did when we were just at the mercy of the for-profit medical system. I was reminded of this terrifying irritation today when my doctor threatened to withhold my medication refills if I did not start showing improvement or agree to add alternate treatment. Here are some fundamental problems with this: First of all, not receiving the medication on time at this point in my treatment will result in withdrawal, landing me in the hospital. Secondly, the treatment modality I had initially refused that she was insisting I submit to is not appropriate for EDS. It is, in fact, advised against because it causes further damage to my already fragile tissue. Third, there is no way for me to get better. It will never happen. I have a progressive illness and am only going to get worse. And finally, my least favorite but deserving of its own paragraph…
WHAT I NEED
CASH. No, it really does boil down to money. You see friends, I requested a treatment that would improve the intensity of the symptoms and was told that it was for people who could pay out of pocket. The procedure? Supplemental hormones. I need testing to determine what my whacky hormones are up to and supplements to balance them. I also need regular IV fluids because my body has a hard time keeping hydrated, which increases pain and dizziness as well as the number of falls I have. Occupational therapy is needed to fit new braces and adaptive items to help prevent dislocations and subluxations. They will not cure anything. What they WILL do is alleviate the pain, help my body heal from the near constant injuries, and help prevent further injury. What I think is most important to point out is that these treatments have the potential to not only alleviate my suffering but they can also extend my life expectancy. I was so proud,I pulled up Practical Pain Management, Current Treatment Options for the Pain Physician, Treating Ehlers-Danlos Syndrome, and more.
WHAT I GOT
Of course, like any advocate worth their snuff, I took notes on my research, included the references, and asked nicely for what I needed. My provider cut me off and accused me of being noncompliant and lazy. She then demanded to know where I got my neck and knee braces and why I was wearing them (swollen knee and multilevel-spondylosis, anyone?) before exploding about how minor EDS is (it has killed my family members) . She continued on her tirade for a while until I asked her how many additional useless treatments she wanted me to do and just how dangerous they should be. She seems to have forgotten the time my heart stopped in the middle of physical therapy after her last referral fully dislocated my ankle during an initial exam and sent her the “I can’t fix it,” letter which prompted my insurance to refuse funding for this service. I finally got her to shut up long enough to listen to me remind her that I was in OT for sensory processing, and she had already sent me there a month ago. That’s all it took for her to return to herself, but not before informing me that she couldn’t possibly be expected to remember everything that happens during appointments (fucking notes much) and then, as if she hadn’t just tried to bully me into willingly destroying what is left of my joints, tell me she will see me next month and making a quick exit.
There are far too many ways in which individuals with disabilities and chronic illness are routinely abused by our society. This just one example of more to come. The scariest part about this is that we have normalized this type of behavior from medical professionals. While we tell people they have a right to advocate for themselves, we also punish them for doing so by telling them they are noncompliant and threatening to withhold medical care should they dare to ask questions. So I want you all to follow @freetheforgotten on tiktok and listen to what she has to say. And until next time, Be Well!