Generalizing Chronic Illness and Ehlers-Danlos Syndrome
I often wonder when it became acceptable to generalize chronic illness patients. It’s been something kicking around in my head for years. I watched my mother go through it (after she was misdiagnosed, mind you). I watched some friends go through it. I went through it. Sometimes, I still do. After seeing the massive and far-reaching negative side-effects of medical generalization, I had thought that maybe it was on a downswing. Maybe people were learning to stop. Right? Wrong.
I suffer from Ehlers-Danlos Syndrome. Mind you, there are 13 different types of EDS. I have hEDS (hypermobile type) myself. This is not something that can or should ever be generalized. No two of us are alike and, because of that one simple medical fact, we call ourselves Zebras. I’ve been generalized multiple times and made to feel like I wasn’t actually in the kind of health crisis I was actually in because of someone’s relative’s roommate’s second cousin three times removed using turmeric curcumin. After going through this for the umpteenth time while I was in the local ER, I went searching for some answers. A call was put out on Reddit to some people who suffer from chronic illnesses. This was the statement:
“Say you go into the ER. You’re in excruciating pain and you tell the docs and nurses what your illness is. You then hear this: I know a person/I have a friend/I have a family member/I know that one celebrity that has (your illness here) and they overcame it by (insert “miracle cure” here).
Suddenly, you are marginalized. You are in a box. The docs and nurses suddenly forget that everyone, literally, is physiologically different. In my case, there are over a dozen different types and it is genetic, no cure, no treatment. But, because this one woman on a major television show was able to overcome one part of her illness, I should be fine.
Your care is affected. They may not listen to you as intently now and they may dismiss you altogether.”
The question was then asked how many of us had had this happen. After receiving consent from the OP, here is a compiled, summarized list of some of the answers they received:
“I have Fibromyalgia… It is an extremely painful disease with so many symptoms that mimic other illnesses, but there are many many doctors and nurses who don’t believe it exists. So when you’re in excruciating pain, they see you as a drug seeker rather than someone who actually needs medical intervention. Fibro is also a classic disease for “miracle” treatments. Everyone and their brother has been healed by eating nothing but kale or taking Bovine Colostrum or B12 Injections or using turmeric or.. or.. or… I could go on forever. No matter who you speak to, their sister’s aunt’s cousin’s best friend had fibro but was cured by dancing naked while chewing wild boar thistle at midnight on the first blue moon of the summer. The only reason I still have Fibro apparently is because I can’t find wild boar thistle in Canada.” — P. Jessen
“This happens all the time. I end up in the hospital in pain that has me sweating and unable to lie still, and I get shrugged at. Generally, I’m given Ativan and sent on my way because they attribute my shortness of breath to anxiety and not genuine pain or symptoms of my illnesses. Nurses are telling me how B12 was a miracle cure for their pain. ‘Take so and so supplement.’ Random registration employees telling me that they met someone who had this and that… One particular visit that comes to mind was another in which I was ignored and sent home after providing my diagnoses. The pain didn’t subside so I went to another hospital. It turned out I had kidney stones and ovarian cysts. The other hospital hadn’t bothered to check because they assumed. I think what bothers me most is people trying these cures or blaming something other than the illnesses when it took me so long to get these diagnoses in the first place. ‘Sorry you have EDS but have you tried yoga instead of pain medication?’” — reddit user vallyallyum
My own recent story involved the last time I was in the local ER. I couldn’t move my head at all because my neck was in the throes of a particularly bad torticollis episode (see: brick neck, dystonia). My neck was locked solid and, for days, there had been a swelling in my spine going up towards my neck from just above my scapula. At this point, the swelling was past the bottom of my scapula and was easily touching my neck vertebrae. As I sat on the table in the ER, shaking and sobbing from the pain, my blood pressure steadily climbing, the nurse who was entering my vitals began to speak.
I couldn’t look at him, but that didn’t stop him. He began to go on about the benefits of turmeric curcumin because of that distant relative’s college roommate’s fibromyalgia (nevermind that we had completely different conditions). He then made a leap: American Ninja Warrior. Enedina Stanger, a competitor on American Ninja Warrior, also suffers from a type of Ehlers-Danlos Syndrome. Suddenly, though, I was at her mercy. The nurse made statements like, “Well, she was in a wheelchair! SHE got UP!”
I could feel my husband squeezing my hand in frustration. I couldn’t turn my head still, but I turned my upper torso about an inch to the left to try to face him. Then, I heard the kiss of death of generalizations: “If she did it, what’s your excuse?”
My tears got so much worse suddenly. My lip quivered as I tried to fight back even more tears. When I’m suffering that badly and already prone to migraines, any tears will bring on a migraine. It was in my best interest to control my emotions. The physical pain was bad enough. But, in this case, I couldn’t help but let the tears out more. What he had said basically let me know that I was a failure to him. I was a loser. The man had a direct hand in my care and had already decided I wasn’t worth his time. Why? Simply because I handled my EDS differently than a trained athlete who may have a different type (she claims she is “uncategorized”). If I need to use a wheelchair, I’m somehow a failure. If I use my cane or any of my braces, I’m a lost cause. All because Enedina Stanger competed with Ehlers-Danlos Syndrome. Somehow, because of that one competition, we were all the same in this man’s eyes. We could all just get up and go run that obstacle course.
Bear in mind that the thought of setting foot on that thing terrifies me. I’ve dislocated toes by putting my foot on the floor. I’ve subluxed ribs simply because the barometric pressure in my region was too high or low. I’ve slept and woken up with six total subluxations and dislocations. From sleeping! You’d think I was running a triathlon in my sleep.
Back to that Reddit post, here are answers from people whose friends, family, acquaintances and loved ones had generalized them. They were almost more painful to read.
“My doctors were great, but my own mother was the worst in this situation. The number of ‘cures’ she tried to push on me was insane. At one point, she asked me to come over to her house to chat & tried to sell me on the cures of aromatherapy because some lavender oil was going to make me pregnant! I left and shut her down after that. She tried to get me to see somebody for acupuncture, a chiropractor (because an adjustment will help my eggs), even offering to add me to her prayer circle. All the while, she happened to forget that I had severe ovarian cyst surgery 8 years before and lost a lot of ovarian tissue on both sides plus severe endometriosis. I had legit medical issues to get over if I was going to get pregnant and no back cracking or scented oils were going to fix those.” — reddit user psychkitty
“I get ‘Can’t you just get a transplant?!’ all the time. I have complex CHD & my illness requires a series of palliative surgeries that will basically continue until I either undergo a heart transplant or die. I have had ER staff basically insinuate that I’m cured because I have had this or that surgery. Or, I’ve heard ‘My friend’s kid had that & he/she is fine now!’. I’ve had to explain how variable the severity of CHD can be; not everyone can have 1 or 2 surgeries and just ‘be fine’. Luckily, I don’t usually get quack cures suggested from medical staff because my health is due to severe structural defects in an organ, but from other people.. definitely!” — reddit user baga_yaba
I can relate so much to their stories. I watched my mother go through this with a lot of our family. I even heard one family member telling my mother: “You’re sick because you don’t love God enough.” It blew me away that that kind of spiritual abuse could even happen. My mother had hEDS and, by all appearances, vascular EDS as well. She was misdiagnosed with fibromyalgia. She died at age 51.
The same family member told her that I was somehow faking my issues. Even after providing an MRI scan, that family member refused to believe that I had a pituitary tumor. I could tell these people about the times I dislocated both of my shoulders at the age of three. I could tell them how many times I am estimating that I’ve sprained my ankles. I could tell them how many times I’ve removed a bandage after a blood test and taken layers of skin with the bandage. But, it wouldn’t matter.
In this society, it has become acceptable to generalize people. The “If I/they/she/he can do it, you can do it” mentality is status quo. Why? Honestly, I think it’s because it’s easier for people to judge and be angry about something when it’s so inconvenient and incurable that it makes them uncomfortable. We all know the old adage that people fear what they don’t understand, right? This is the same thing. I’ve had to educate so many people on what Ehlers-Danlos Syndrome is, that supplements are not going to suddenly cure my collagen deficiency, that I need braces to stabilize my joints, that my pain medication and medical cannabis are not going to access the same pain centers in my body, that I can dislocate my shoulders at will because of my lack of joint stability, that I can turn my leg around 180 degrees because of the same thing and, worst of all, that there is no cure.
There is no cure and no treatment for Ehlers-Danlos. The genome for my type has not been completely sequenced, though the Ehlers-Danlos Society is working on that as we speak. Every doctor, nurse, CNP and other healthcare provider I see is not going to be treating my Ehlers-Danlos. Not one of them. They will be treating my comorbidities. They will be treating my pain. This one thing, I’d imagine, scares doctors. This is a life-long sentence, you see.
My question is still there, though. Why, knowing that no two of us EDS patients present alike, are we being generalized? Why, knowing that no two human beings are completely alike, are patients in the chronic illness community being generalized? It is nothing short of foolishness to say “Patient A has __________ and so does Patient B, but they both have completely different genetics, are different ages, different genders, live in different climates, eat different diets and have different access to healthcare.. but let’s treat them both with the same treatment”. Sometimes, that works. But the instances in which it works are far fewer than the instances where it doesn’t.. because we are all so very different.
I am taking this moment to encourage anyone in the medical community to do something different. I am encouraging you to do two things, specifically.
1) Ask questions.
Ask us how we feel about our bodies. We live in them. We know what they feel like.
2) Listen to our answers and statements.
Some of us are undiagnosed. Some of us are underdiagnosed. We are all good at research. We are all good at reading up on what is going on. Don’t discourage us from that. If we make you a list of symptoms, listen to it. Read it if we give it to you. Don’t interrupt us. Don’t belittle us. Don’t tell us that we’re full of shit.
We’re human beings. We’re struggling. We matter.. and we need your help.
