To the Doctor Who, With a Horrifying Comment, Proved You Don't Understand My Pain
If there is one thing I’d like you to know about me, it is that the only times I seek help from the emergency department is when I’m desperate; and even when I am desperate it takes a great deal of coaxing to actually get there. Please trust that as a 22-year-old young lady, the last place I want to be is in the emergency room – the last thing I want to be is sick.
You see, two years ago I was diagnosed with complex regional pain syndrome (CRPS). If you took the time to research this rare condition you would know it is ranked as one of the most painful diseases known to science. I have a team that works relentlessly to ease my pain, I am working relentlessly to give myself the best shot at controlling this pain and learning to live with not only CRPS but the other five conditions I’ve been fighting for nearly 10 years.
Throughout those 10 years I have been told by countless doctors how wrong I am in everything I go about doing. How I’m not doing enough to help myself. I’ve listened to medical professionals speak to me as if I am the “lesser being.” I’ve been judged about the medication I take, whether it’s too much or not enough. How I need to stop doing one thing and start doing the other. I have been through 10 years of fighting to be heard and not judged, fighting for concrete help and solutions to ease my pain. I’ve been made to feel I am the problem, not the lack of research, that because my conditions are rare and misunderstood I am automatically put into the pile of “misfits.” Instead of helping me find balance, the majority of these past 10 years I’ve been made to feel so incredibly small and insignificant in your world. I’ve been made to feel that it is my fault for not fitting into the case studies and experiences you studied in your medical textbooks.
I’m in a full-time therapy program that helps me learn to cope with the excruciating pain and live despite it. I see naturopathic doctors and functional medicine doctors. I hydrate myself even if it makes me sick. I take supplements and vitamins I’ve been told to take. I participate in yoga. I practice mindfulness. I do everything I have ever been told to do by every single doctor who hasn’t taken the time to see my pain and struggles for what they are.
I walked into your emergency room with a face that was swollen and beet red because of this monstrous disease I fight. I held my breath. I held my breath because I didn’t know if my symptoms would be minimized, if I would be seen as a drug seeker or a “frequent flyer.” I don’t know which doctor I’m going to get and what understanding they will have of my pain, and that terrifies me. I should not be terrified of the place I have to turn to for help, for comfort, for relief.
When you introduced yourself to me and took the time to understand my pain and concerns, I was relieved. I thought I had finally had someone who was going to help me get relief from the pain that had kept me from sleeping for almost three days at that point. Your ordered medication to help my pain, which did help at first, but because of my tolerance to the medication, my relief was short-lived. After a few doses of medication, it came time to be reassessed. I was expecting a quick follow up and a discharge, but I got the complete opposite. I got “the speech.”
You told me I needed to reduce my use of pain medication, which was already extremely limited. You blamed me when I didn’t respond to the dose of medication you gave me, you told me continuing to increase my dose will lead to increased tolerance, a concept I am not foreign to. This speech is standard when I turn to the emergency room for help. I expected it and braced myself for it, but I could not have prepared myself for what you said next. You told me if I continue to build a tolerance, I will end up overdosing and dying “just like Michael Jackson.” That’s when I knew you didn’t understand, and you wouldn’t understand. I tried to explain to you I only seldom take pain medication and it takes excruciating pain and a lot of pressing and pushing for me to actually allow myself that pill. I told you without it there are so many nights where I hurt so bad and shake and cry myself to sleep because the pain is excruciating. I expected a little bit of compassion in that, but instead you told me to cry myself to sleep if I have to but to stop taking medication. You continuously repeated that I would end up dead if I continued to take medication. You spoke to me until I felt like I was 2 inches tall and could hardly breathe from my tears.
But you don’t understand. You didn’t try to understand. You will never understand the pain I live with each and every day and how far I’ve come in trying to manage this pain myself. I walked into that hospital desperate for relief, but instead walked out wishing I didn’t have to face another day with this misunderstood pain. You, sir, get to go home at the end of your shift feeling tired but fulfilled. You get to live your life and hold down a job you worked so hard towards, while I can barely get out of bed most days. You took an oath to do no harm. It angers and upsets me because maybe if had a condition that was more understood, a condition you could see, I wouldn’t have been told I need to cry myself to sleep instead of taking medication that could allow me to actually sleep and live.
Tell me, if I was your daughter would you be OK knowing she lived in excruciating pain? Would you be able to look her in the eyes and tell her to cry herself to sleep? Would you tell her to her face that if she continues to seek out relief she will end up dead? Would you allow her health and her pain to stop her from living the life she deserves to live? No sir, you wouldn’t.
What you don’t understand is I am at your mercy. I am at the mercy of every health care practitioner who determines my fate. I am at the mercy of the diseases that plague my body and the doctors who are supposed to know how to ease my pain, not inflict it. I did not choose this condition. I did not choose this life of pain. I chose to seek out help and instead was reprimanded for the things I do to keep myself afloat.
There is so much emphasis on drug addiction and the narcotic epidemic, but the patients like myself who are looking for the relief those medications have to offer are falling through the cracks and being forgotten. We are getting lumped into a category we never asked to be in. I hope the next time a patient comes to you out of desperation, you don’t reprimand them from feeling pain. I hope you take the time to listen and understand because despite your education you do not know how a condition affects a person. I hope that you gain compassion and empathy towards the people who are coming to you for help, instead of demeaning them. More than anything, I hope you never have to endure excruciating pain and ignorance to match.
I hope you remember that I am more than a statistic or a patient. I’m a daughter, a sister, a friend, a niece, a granddaughter, and a 22-year-old girl who has dreams and hopes that I deserve to fulfill.
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