Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.
In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.
When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.
You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:
“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”
Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.
“You’ll lose 21 pounds in 21 days.”
What are you an infomercial?!
“Inflammation is the cause of all your problems; you just need to cut it out.”
Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?
“Do you eat gluten? You haven’t cut it out. That is your problem.”
I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.
“People drive from Kansas just to get this list, but I’m going to give it to you for free.”
Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.
“Actually there is an entire edition of a journal dedicated to this.”
Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.
“You need to get off opiates.”
He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.
“You need to try biofeedback.”
I have. I even use some techniques for relaxation, but it didn’t cure me.
“You just didn’t see a good one.”
I saw one who is an expert to my condition.
“You have to practice more.”
I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.
“I treat people with EDS all the time.”
He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.
“Just try what the doctor is recommending.”
This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun.
Amen, I had a doctor once try to push an experimental drug on my that would perforate my ear drum… Not POTS but something else and he just would not listen to me when I said I didn’t want that. What a waste of time to even see that doctor and the feelings of shame he tried to push on to me for refusing were outrageous…