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 mom 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!
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.
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 mother 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.
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.
*Original text shared with permission from Parenting Through The Fog
Read more about Vanessa here: A chronic illness journey.
I know exactly how all that feels, I was dismissed by so many Dr’s and er Dr’s that I just had no hope left after so long I finally got that 1 dr that cared and got my diagnoses and it was Graves disease…I hate going to the dr bc of it..and it’s 9nly gotten worse since then by family friends and Dr’s and surgeons
Have you been diagnosed? I know people often try to help by offering their second hand diagnosis, but PLEASE look up PSEUDOTUMOR CEREBRI, or more commonly called now, intracranial hypertension. This is what I have and sounds, to a T like what I go through. It’s basically excess spinal fluid that ends up causing pressure behind the optic nerve and pressure on the brain… will give you meningitis like symptoms, excruciating migraine, vision changes, mine often are like looking at someone with half their face smashed in, or can be blurry vision, but it acts like a tumor, but isn’t. Just caused by the pressure. It is not being absorbed by your body and will continue pressure and can cause blindness and other complications. Doctors in ER can look in your eyes, but dialating them is the best way to see… Spinal tap to take the excess fluid out will give you almost instant relief and the only way to get that relief. There are other treatments, including medications, but medication may be what’s causing it. Honey, please, please, please. With vision changes, they should have done a CT scan on your head. GO TO AN EYE DOC AND GET THIS DONE. THat’s how I was diagnosed. Explain vision changes and eye pressure. It will cause pain down your spine and numbness and those other symptoms when the pressure becomes too great.
I’ve got a list of diagnoses as long as my arm, but that hasn’t made the cut, yet. LOL! I actually did just read about this recently, and I’m going to start the hoop-jumping process to get in to see a neurologist as soon as possible, but without the ER referral, that is going to take twice as long. I’ve been needing to see one for ages. Thank you!
Thank You! Thank You ! Thank You !
Every
damn time I go to the ER , the doc takes one look at my chart and sees
one of two thing, Patient is on pain meds, or…. Patient had multiple
panic attacks for two months four years ago. So every single word out of
my mouth is dismissed at that point as either seeking drugs or “having
anxiety”. I have learned to hate doctors other than my oncologist.
The last time I was there, I had a tooth literally cracked in half (horse accident) the doc came in after an hour waiting in my little room, asked me to open my mouth, took a two second look, walked out the door, then two hours later a nurse came in and had my discharge papers. No meds, no referral, no xray, no nothing! I walked out to the billing desk and was floored when she asked how I’d like to pay the $2,700.00 dollar bill for their services today.
Yes they’ll be getting an earful when the bill comes, I can tell you that! I should tell my insurance not to pay!
I’ve had this happen to me, too. =( I also have a big doctor phobia because of being treated like this. I was even berated by a gynecologist for having a PTSD flashback during my very first visit ever even though she KNEW that I was molested as a child and raped six months prior. It took me 15 years to go to a gynecologist again and I still have severe PTSD panic attacks and flashbacks when I go, no matter how nice that newer doctor is. If you don’t have compassion for others, then stay the HELL out of the helping professions and go into law or business!
I agree with the poster that said you should get checked for Pseudotumor Cerebri. I have it too, the symptoms are similar. Also, a lot of E.R.’s can’t, and won’t do MRI’s. Also, don’t worry about them thinking you’re a drug seeker following you to a different E.R…. It won’t! E.R’s do not share that information with each other. I know how panic inducing that is, but just because one asshole puts it in your file, it doesn’t mean that every other doctor looks at it to see what is going on.
Also never ever be afraid to ask for a patient advocate. They are there to fight for you and help you when you’re sick ,and to keep the hospital from getting sued. They work for you, not just for the hospital!
I am so very sorry. I hope that you are able to get a firm diagnosis soon and that things turn around for you. <3
I had a similar experience to yours. I waited in the ER for hours and hours, was finally seen then sent home with minimal pain meds. A day later I was back and yet again sent home. The day after that I went in because a) I was in truly excruciating pain and b) was losing the use of my legs. I was finally admitted but the neuro doc didn't take me seriously until after I began having trouble breathing even though the residents kept telling him I had Guillain-Barre Syndrome.It turned out I was in the beginning stages of a severe case of Guillain-Barre Syndrome, a somewhat rare syndrome that attacks the insulation on the nerves. I ended up paralyzed and on a ventilator for 11 days, spent another 2 in the hospital then was transferred to a rehab unit for 6 weeks where I had to learn to feed myself, how to sit up, to walk again, how to manage a shower, etc. It was the worst time in my life. I'm permanently disabled now. It's been 11 years…
Amen it’s been six years almost seven now since Igot sick and dealt with Dr’s like this all the way I’m now given up hope they will ever be able to help I stay to myself in misery just to not be labeled by insensitive drs who don’t care if u die or live but my Kids do so it takes every thing in me to keep going day by day thank u Lord for my kids and husband or another suicide would be in the in drs hands because they just saw me as disposable. Keep living then they lost God bless you all prayers. Ps diagnosis of pseudotumor, seizures, limb pain numbness mood problems fatigue memory problems depression and a malformed portion of my skull at the base, facial tingling numbness also. Good luck prayers to all.
I understand, just how frustrating this is, for us chronic illness folks!
I have a twelve year record, of perfect, use and handling of pain meds. I have past twelve years of regular, drug, urine, screening. Not one, single, positive, for anything. And, two years ago, I got double pneumonia, and like you, I avoid most E.R.’s and most doctors, because most of them, are dicks, and, because of how they treat us, legitimate, chronic illness, patients, who are the picture of responsible pain medication, users. I also have anxiety attacks, before seeing my regular, pain specialist, for a lot of the same reasons as you, even though, I have nothing to hide! Like you, I know how they treat us, and, what they have put us through, and, you’re right, it is like PTSD! Anyways, the point of all this, is, after struggling for four days, with double pneumonia(And like you, we get treated so badly in the E.R., that, I almost died from Appendicitis, because, I loathe going there, soo much, that I waited 4 days, before going. The surgeon said, that I was 12 hours from dead. I’d rather die in a ditch, or my own bed, then, deal with their ill-treatment and mistreatment), I, reluctantly went. And because I hadn’t been able to keep my medication down, I was in withdrawal, and, after the doctor heard what I was dealing, he said, that he would give me a shot(I’ve never been the type to go to the emergency, for a shot). Then, the nurse, came in, and, we started talking about, the double pneumonia, and, because I hadn’t been able to keep down food or medication, for a week, I wasn’t fully, with it, and as we were talking about the double pneumonia, I said, “Ya, I need a fix.” Now, you don’t have to be an addict, to know, that, that, is pretty much, the LAST thing, you should say, if they are about to give you a shot. Now, she thought I meant, drug fix, when, what I ACTUALLY was talking about, was the double pneumonia! I needed a fix, for the double pneumonia, because I had been dealing with it for almost two weeks. But, of course, she ‘assumed, I meant, a fix, fix.
And, obviously, she quickly ran out to tell the doctor, that I was a drug addict, and was exhibiting, ‘drug seeking’ ‘behavior’. As you would expect, the promised shot, never, was forthcoming, and, like you, it SEVERELY chaps my ass, that, that is on my medical file, regardless of where I go!! Like you, my record is impeccable, and, I am ACUTELY, AWARE, that something like that, is the kiss of death, once, it is put on your file/chart…
I’m sorry for all you have had to deal with, and, how terrible, you have been treated by the medical(when I went to spell medical, I accidentally, spelled medival; how apropos!) field too…
A powerful piece of writing but it’s a shame it had to be written at all. Doctors need to remember why they went into medicine…to help other people. Just because they’ve become jaded doesn’t give them the right to treat patients with disrespect, or label them.
I too live with Chronic Pain and detest going to the ER unless I have no other choice, exactly for this reason. I don’t want to be seen as a drug seeker. I don’t want to have that written in my files because 95% of the time when I do go to the ER, pain meds aren’t going to help my problem anyways. I need a different type of treatment.
You have my sympathy, Vanessa. I’ve been in your shoes and they stink. We need to start re-educating doctors as to what their real job is – to help patients regain control of a medical situation beyond their abilities to manage. I hope the next time you need to go to the ER, you are treated compassionately and with greater care. I hope the next time you NEED to go to the ER, you will. Please don’t let this experience stop you from getting the care you desperately need if something happens to you again.
ps: Thank God for good nurses!