My Knowledge of My Body is Often Ignored When I Seek Medical Care
I walk through the doors behind the front desk of the pain clinic to room number four, the white-walled, two-chaired, one-tabled examination room that looks identical to the room I was in the last time I was here. I fill out the form for the doctor to read; circle my fingers, circle my back, circle my hips, circle my knees on the image of the body to indicate where I’m in pain.
I was diagnosed this November with Ehlers Danlos syndrome, a genetic disease that affects the collagen in my body but feels as though everything from my bones to my muscles to my brain is turning to a mixture of acid and mush. It took seven years of trying to assert the existence of this pain only I could feel or see before receiving this diagnosis. At thirteen, I fell ill with stomach pain. The doctors, noting my weight loss, diagnosed an eating disorder. At fifteen, I broke out in rashes. My hair thinned. My legs quivered. My chest ached. The doctors, noting the quantity of different symptoms, determined stress and perhaps anxiety. I avoided the doctor for three years, retreating, traumatized by disbelief.
I used to believe that diagnosis could grant validity, that having a name could act as key to belief. In a medical system where disabled people’s assertions of pain are invalid, instead validated only through the certification of truth by outsiders, I believed diagnosis would grant me relief, if not from illness, then from the seven years of being told I did not know myself.
But the cycle of invalidation continues. I had not slept for two weeks. I was vomiting. My ears were ringing. My heart rate was climbing into the 180s while I tried to sleep; I told these things to a nurse one night on the phone somewhere in the fog of months post-diagnosis. She told me this was the nature of my condition and I had to better learn to live with and manage it; my degree of pain was not a matter of access to resources that could ease it, but, to her, a matter of my own failures, my own inability.
Before my doctor’s appointments, I sometimes play a game in my head. I imagine myself walking into the examination room and not smiling. Then I rewind and I walk into the examination room and smile. I walk into the examination room and do not cry. I walk in and cry. I walk into the examination room and do not speak. I walk in and speak. Loudly. Endlessly. Regardless of which role I play, I have determined that to avoid having my emotions categorized along with my pain into diagnosis, I must somehow balance myself on my already shaky, hyperextended legs, carefully at the center between extremes.
I am not new to this kind of arithmetic, the calculations made in my head of what will be seen as too few symptoms to schedule a doctor’s appointment, or too much within the limited view of health as single variable. When I was thirteen, I was institutionalized after a children’s hospital could not determine the cause of my weight loss. In the months preceding diagnosis, I was angry. I cried. I spoke. Loudly when I was taken away from my parents. I look at the records I was able to secure five years later, at the diagnosis of anxiety I was given for refusing to cooperate, for making poor eye contact, for appearing “guarded,” in the face of strip searches and supervision in the bathroom. My refusal to willingly hand over any part of myself was my self-preservation but, to doctors who could not see my humanity, it was disease.
The idea that things like a child’s grief after being ripped from her parents arms, a woman’s determination to be believed, and a sick person’s frustration and fear for their life are pathological, diagnosable, disease is ableism. It fills me with an anger I cannot and will not silence.
This kind of emotional pain cannot be circled like my hands or knees or back on any questionnaire. But this does not mean it is not also rooted deeply inside my body, inflamed and aching along with everything else.
Diagnosis can be relief when it gives a word, a name, and a community for a person’s experience, but it can be oppressive when it is used as a tool for dismissal of pain, of self-definition, and of life.
At this latest appointment, the doctor enters the room and tells me it’s nice to see me in person after getting to know me on paper before we met. I wonder, though, what might be different, if she got to know me through, and listened deeply to, my own writing of myself.
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Absolutely spot on. I dislike those drawings almost as much as numerical and impact scales. They seem to be looked at more for how it’s not possible, than for the information we provide. I got so frustrated at one visit I wrote “the appointment” to let off some frustration..
Wonderful insight – as someone whose pain (both physical and mental) has been diagnosed as self inflicted or imaginary, I can relate to this writer!!! Being told “snap out of it” so many times starts to hurt more than the pain……..doctors looking at me, like, not you again! All the while, having some actual, real medical issues, morning sickness while pregnant, concussion, gallstones, caregiver burnout, and most recently grief!!! It is time for someone to step up and give a voice to caring, sensitive, and hurting people (knowing they are the best)……
Very well said, especially the part about your humanity.
I’m 59 and have never had my chronic pain
Fibro myalgia acknowledged
Not once not even migraines til I lost my sight from one and they could not ignore it
Yes I agree with you 💯 percent. I had to go back to a doctor that did one of my stimulator trials, he’s like I remember you. I’m like yeah I am worse now. Ugh. He just wants to do another EMG on me. He doesn’t think all my pain is coming from my new injury. He’s thinking it’s my lower spine and fusion are crumbling in pieces. He won’t give me any medication not even a prescription ibprofine nothing. I told him and many, many doctors I get sick off of Tylenol they don’t care. Since I’ve been out of work in May of 2018 I’ve lost over 20 lbs from not eating well because I’m sick from the Tylenol. I have given up hope in the future of doctors and treatment.
I had a similar problem two years ago while in the hospital…I had a horrid migraine that no one could seem to treat…so into the hospital…the pain was so bad that not even IV pain medications were touching it…at one point, writhing on the narrow hospital bed, tears streaming down my face, the doctors decided to test my spinal fluid to see if that was the cause of my pain…this after a CT of my brain which showed absolutely nothing…now, for those who have had spinal taps, you know that you get an instant headache shortly after the procedure…add that headache to a migraine they could not seem to treat and you can imagine my pain when I was taken back to my room…screaming in pain, posturing in the bed, my husband ran for a nurse…the nurse came in and asked me what my pain was on a scale of 1-10…I HATE those scales…I live with two diseases which cause me to live in pain 24 hours a day, 7 days a week…I have been on pain meds for years…sobbing, I told the nurse I was at a 15 (my only way of expressing that my pain was beyond anything I had ever experienced before, being a veteran of pain)…she actually got mad at me…told me I had to keep the pain on the scale…I remember shouting at her that my pain was a FIFTEEN dagnabit!…she went out of the room in a huff…soon thereafter the doctors decided that, the only way to potentially break my pain, was to put me in a medically induced coma…I was a FIFTEEN and one doctor saw that and believed me…two days later, coming out of the coma, the pain was gone…it was like magic…but I should never have had to argue with that nurse about my pain…I know there is a second chart doctors and nurses have available that show faces from smiling to sobbing…apparently that nurse hadn’t seen that chart as I had lain sobbing and posturing in front of her…thank you for your story…it is mine and far to many other peoples stories as well!!!!!
I LOATHE those stupid pain scales. I’m at a constant 10 off meds and often times even while I’m on meds. So, when I end up in the ER or hospital for a really bad flare-up, that scale is ridiculous. I was just telling my husband the other day that they need a different scale for chronic pain patients. They need one for a typical pain day for us and they need one for when we are flared up. And every pain mgmt appt., they ask me to rate my pain 1-10 so they can log it in my medical notes. I think to myself how I wish I could be honest and tell them how it really is, but I’m not completely honest because I fear they will think I’m lying, exaggerating or that I’m craxy and it’s in my head. If I were to be completely honest, that pain number would be an 8, 9 or 10 90% of the time. And that’s MY pain. Now if someone else (without chronic pain) were to be feeling my pain, they would say it’s a 10++++ because most people aren’t used to that degree of pain, especially at a constant level. I feel like when a chronic pain patient says they are at a 5 or 6, that could easily be a 9 or 10 to many others. That scale is a horrible way to gage someone’s pain, especially in the hospital.
I am currently 3 years into my journey of a “diagnosis”. So far, I have confirmed that I have Sjogren’s. I potentially have a second autoimmune disorder and genetic disorder as well. Along this journey, I have felt guarded in just how many symptoms you can complain about because how can a doctor take you serious? When you literally write down a page of symptoms, as a nurse myself, I know what the assumption is about the patient (she must have a pysch issue). I lost my very good earning job after 16 years related to my illness symptoms. My life has been unraveling, and to just have a definitive answer could at least validate me as a person. I have had to push my doctor’s the entire way, and I often feel terrible for those without any medical knowledge, because I know how urgent some of my test results have been or what they mean. Some might let things go, or not connect the dots between things. I fear for how much worse our health care will be in the near future.
Unfortunately, your story could be written by almost everyone in the chronic pain community. There are rarities but with the “opioid epidemic” being thrown in the country’s face daily, the uneducated or uncaring Medical professionals have been given a license to belittle and berate chronic pain patients. It must stop.
I suffer with costrochronditis it’s horrible been to cardiologist and other doctors no one can help me I also suffer with fibromyalgia 😔