I understand. I do. You doctors are under a lot of pressure these days about your opioid prescriptions. It’s been all over the headlines lately. I also understand that in the emergency department you see a large proportion of people coming in for a quick fix and a scrip for 24 5/500 to take home. I know the drill, I’ve actually known a few pill shoppers personally. I’ve ended an intimate relationship over my own pain medication going missing from my purse. I get it. However, I do think there are actually a few things that you don’t quite “get”.
For starters, I’m positive you don’t know (because you didn’t care to ask) that I fully intended to endure any and every test you might have performed (including the MRI I was hoping against hope would happen) without any form of sedation or pain medication, even though I’m prone to anxiety attacks in closed quarters. I’ll note that my main complaint at triage was not pain, and while I did mention that I was in pain during the course of my triage exam (kind of unavoidable, as a person who suffers chronic pain), I also expressed the fact that I drove myself and therefore did not want mind-altering substances so that I would be able to drive myself back home. I’m not sure how I could have been more clear.
I came in with vision problems, extreme pressure in my head and what I swear is increased pressure in my spinal column. With numbness and tingling in my hands and feet, vertigo, hand tremors, and my legs partially stopped working for a moment today. They went heavy and limp and half numb. Those might not be emergent symptoms to you, but they freaked me out! I’m a single parent of three kids, I can’t be having body parts randomly giving out on me without explanation! I came as soon as I could, when I would have time, and hopefully you would have time, to run some tests. I wanted to leave with answers. What I left with were vision problems, extreme pressure in my head and spine, hand tremors, and legs that went funny as the discharge nurse was walking me out the shortcut. At least the nurses were freaking awesome, as always!
In the chronic illness and chronic pain community, we measure the energy it takes to get us through our days in spoons, and I used spoons I didn’t even have…
I also came in because I’ve been having back problems for months and have been fighting with the insurance company for an MRI, to no avail. You see, my pain management specialist, the one who manages my pain (the reason why I didn’t come in for pain meds), thinks something might be causing nerve damage. Over the course of the past several months of waiting for insurance to approve imaging, my symptoms have gotten progressively worse. To the point that at night I wish I could rip my spinal cord out of my spine. That kind of worse. Those are the nights, when it only tingles. During the day I’ll be walking, or bending, or turning, or sitting, and I’ll get a white-hot shooting pain from the center of my spine that goes down through my hips and wraps around my thighs and goes all the way to my toes. Other times the same areas go completely numb. I’m having other troubles related to nerve damage that I tried to tell you about, but you dismissed me.
My pain management doctor ordered an MRI last summer but after a few months I was told it had to go through my primary care doctor. Well, I’ll save the story of the MRI, as it’s a separate tale in itself, but the not-so-happily ever after is that my insurance seems to think it is cheaper and more patient-friendly to put me through every single torturous test I went through eight years ago that built up to my last MRI because apparently they (like you) know more about how my health should be managed than the doctor who has treated me every single month for the past ten years! So you see, the Emergency Department at your hospital was my last resort to try to get a picture of whatever is going on in my back before it progresses to The Point of No Return.
Instead of ordering a simple test that wouldn’t even have been that big of a deal for you, you completely dismissed me. Even after I told you I wasn’t there for your drugs, you belittled me. Instead of providing care and compassion for someone who has been desperately fighting through bureaucratic red tape while still hoping for treatment, you gleefully added a whole new mess of red tape. Because now thanks to you, I’ve got an E.R. visit as a drug seeker in my medical file. That is going to affect how I am treated at every emergency room I go to, no matter why I’m there. I actually do have several legitimate medical conditions which are commonly treated with narcotic pain medications. (Did I mention I have a specialist? Pretty sure I did.) I also have a few conditions that cause vomiting. See where I’m going with this? There’s times when I can’t keep down my medications. So next time I have to go to the E.R. because I’ve vomited my legally prescribed and responsibly taken medication, instead of being treated with care and compassion as a person who is facing a lifetime battling chronic illness, I’ll be treated like a dope-sick addict looking for a fix. So screw you for that.
OK maybe that was a little harsh, but you don’t know what it cost me to even get it together enough to go to the hospital. In the chronic illness and chronic pain community, we measure the energy it takes to get us through our days in spoons, and I used spoons I didn’t even have in order to drag myself out and go. Did you notice I was wheeled in by medics? That’s because I nearly collapsed in the parking lot, but that’s not emergent. Move along. Nothing to see here. Just a druggie wanting a scrip. I’ve been putting this back thing off for months, and no wonder! See what it got me? I’m hurting even worse now, from sitting on the gurney for so long, waiting to be discharged after receiving no medical care. I’ll be really interested to see the bill.
Instead of ordering a simple test that wouldn’t even have been that big of a deal for you, you completely dismissed me.
No, you don’t know what it cost me, at all. You’ll recall I did tell you I had to wait on a sitter for my kids, but what I didn’t tell you is my daughter was still awake when I left. She’s two and we’ve never spent more than an hour or so apart in her entire life. Do you have any idea what it cost me to walk out the door and leave her behind, crying that she wanted to go with Mommy? How unbelievably selfish I felt for leaving her? As a parent with chronic illness, I’m often putting my own needs aside in order to care for my children and it took quite a bit of courage to talk myself into leaving my daughter in tears, in order to go take care of my own needs. But I told myself, “You’ll have some answers when it’s over, so it will be worth it.” I’m not used to being so drastically wrong.
People like me who have an invisible illness often have a combination of doctor phobia and PTSD (gee, I wonder why). Well I’ll tell you why. We spend years of our lives having doctors tell us it’s all in our heads or we’re making it up for attention or we’re drug seekers (ahem) until we finally find a doctor who has enough training and compassion to listen to us long enough to actually find us an answer. Unfortunately even after a legitimate diagnosis, many chronic illness sufferers are still left fighting for recognition in the medical community. Even with medical codes in our charts and diagnoses we can’t even pronounce, and a list of ailments recognized by the ADA and the Social Security Administration, even then we’re faced with judgement, discrimination, and mismanagement of care by doctors like you. It takes me weeks, sometimes months, to build up the courage to even make an appointment with a new doctor because of doctors like you. I have anxiety attacks on the way to every doctor’s appointment, even ones I’ve been seeing for years, because of doctors like you. Doctors like you are the reason I’ve been putting this off for so long, and the reason I didn’t want to go tonight. And you’re the reason I wish I had stayed home in my comfy bed and suffered in peace.
But I told myself, “You’ll have some answers when it’s over, so it will be worth it.” I’m not used to being so drastically wrong.
I want you to know that even if I had been a drug seeker, I still deserved decent medical care and a modicum of respect. I had other issues besides pain, remember? I complained of vision problems and sensitivity to light and you stood with a fluorescent light behind your head and expected eye contact. Even if you had no respect for me as the person you suspected I was, you were still supposed to be a professional and perform your job. I got more helpful and courteous medical advice from the discharge nurse who (incidentally) spent more time with me than you did, showed more care for my well-being than you did, and was generally (and I assume morally) a better person than you are. I will definitely try to find myself a decent neurologist since you couldn’t be bothered to refer me to one, and I hope that lovely nurse gets a raise.
I know you aren’t going to see this. I know you aren’t going to learn anything from tonight’s events. I know you’re still going to go on treating your patients like crap. But I know I learned a couple of things. I learned that I’m stronger than I thought, to be able to walk out of there, with limited use of my legs but my head held high. And I learned that I actually can be more passionate about patient rights. I have a feeling that my words are about to reach a lot farther than I could imagine. I know my story isn’t the only one of its kind. Tragically, I’m positive it won’t be the last. But if I share my story, and the next person shares their story, and we all keep sharing our stories, maybe eventually someday enough people will get pissed off that things will start to change and doctors like you will be out of a job. Until then, my readers and all of their friends are more than welcome to share this.
Originally published with permission at Spoonies for life on April 10, 2016
Parenting Through The Fog 
I went through a very similar thing about 10 years ago. I was having severe chest pains, comparable to labor pain I now know, and I went to the ER. I was also on pain meds at the time due to a chronic pain condition, but like you, I was taking them responsibly and when I went in I was not asking for pain relief, just answers. They did an ekg and blood work and said I was having acid reflux. I tried telling them it was definitely more than acid reflux (which I had experienced before) and could they please do more testing. I was met with a hard no and discharged. The pain came back again worse, so I went back in. I was labeled a drug seeker then. I was just trying to get help because I knew something was very wrong. I was told to stop coming in, that nothing was wrong with me.
A couple of years later, after having more attacks than I can remember (which I didn’t go in for), I had the worst attack so far and didn’t go in because I knew they wouldn’t help me. After spending hours scared that I was going to die, I collapsed in my bedroom, paler than pale and drenched in sweat with a high fever. My husband and best friend got me into the car and were prepared to do everything in their power to ensure they take me seriously this time. Because I had a fever and looked like death, they finally did some further testing and found my gallbladder full of stones, on the verge of rupture, and full of infection. All which could have been treated much sooner and at much less risk to me, had I not been dismissed as a drug addict.. I ended up having it removed after several days of IV antibiotics.
Even though it was revealed that all along I had a legitimate medical concern that they had irresponsibly dismissed, I was STILL treated like a drug seeker while inpatient. They mentioned it over and over in my medical record. FOR NO REASON. I had never exhibited drug seeking behavior. I never once lied about what I was taking, which was prescribed by a doctor, and I did not ask for pain meds any more than they were giving me. I was in a tremendous amount of pain after the surgery but I was afraid to say anything because I thought they would think I was just trying to get more drugs. I was often shaking from the pain, that’s how bad it was.
Anyway, I was much better for a long time and didn’t need to see doctors regularly for anything, and no longer require pain management. But recently I was diagnosed with different issues, and even though my main issues do not require pain management, I still get treated poorly for advocating for myself and saying what I need. Just asking for a PT referral from my doctor was met with resistance. She suggested my issues were not as serious as I was claiming. My joints are literally popping out of place when I walk normally. I have a diagnosis of hEDS. What is the harm in going to PT, I wonder? A nurse rolled her eyes at me for wearing a Fitbit to track my heart rate, but testing by the cardiologist revealed that it was accurate and that I did in fact have an issue requiring beta blockers. My GP still refuses to update my chart with my two most recent diagnoses, hEDS and POTS. Even though I was diagnosed by specialists.
Even my husband, who has no chronic health issues just experienced this. He went to the ER because his bp was 180/105. He was told he just had anxiety and was sent home. He did not have anxiety when his BP first spiked, he was only anxious about going to the hospital completely alone in the middle of a pandemic. Which I think is pretty understandable and should not have negated any concern about his BP being so high. The nurse smugly said “I don’t have meds for that (anxiety) here so I can’t help you.” I agree that the medical system in the US is broken and something needs to be done about it. I bet if there were some accountability this wouldn’t happen so often.
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