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Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker

On June 26th, I had my gallbladder removed in an attempt to lessen the frequency with which I get pancreatitis. For those unfamiliar, pancreatitis is a condition where for some reason, bile and digestive enzymes back up into the pancreas causing inflammation and pain. In a colloquial sense, my pancreas basically tries to digest itself. The leading causes in North America are alcohol abuse and gallstones.

Three weeks later, I started experiencing extreme pain in my upper abdomen. When the pain reached a level 10, I knew I had to go in to the hospital. What followed was a cumulative 20 days of admission, which included three separate trips to the ER. As sometimes happens, my second and third trip were marked with the stigma of being treated like a drug seeker. This is a snap decision made by doctors that can seriously impact the quality of care you receive.

Even before this I have a lot of experience with ERs and doctors. I have been in and out since I was 18 and began to experience serious joint symptoms. After all my experience, I have a better idea of what doctors look for when determining whether or not you are there legitimately or if you are there to score. The problem is that these are not always within your control.

  1. Visiting multiple hospitals

One of the biggest red flags for drug seeking behaviour is if you have visited multiple different hospitals. This is because people who are looking to get drugs rely on the lack of shared information between hospitals. Someone who has become recognizable in one hospital can avoid that scrutiny by going to a new ER. The problem of course is that you might have a completely legitimate reason for going to different hospitals. Because of where I live, I am closer to the general hospital. This makes it easier for my partner to come visit me and it is also where most of my doctors have their offices. Most but not all. On my first visit on this go-around, I had a follow up with my surgeon the next day. I opted to go to the French hospital where my surgeon was in order to make sure I could still get my follow up. When a day or so after coming back home my symptoms came back, I opted to go to the hospital that knew me better. Unfortunately, this made it seem like I was playing ERs against one another.

People with chronic illnesses, those who move around a lot, the children of divorced joint custody parents, might all find themselves frequenting multiple hospitals for treatment. There are valid reasons to do so, and yet, even when the reason is clear it can be difficult to overcome the suspicion that such a mark on your record creates.

  1. Specificity in Treatment

If you are an addict, there is a good chance that you are addicted to a specific thing. If your drug of choice is Gravol, then Zofran isn’t going to cut it. Same if you prefer morphine to dilaudid or other opiates. In the case of all of these, the method of taking the medication might be as important as what type. If you are specific about what types of medications work for you, and/or the methods, this could suggest to doctors that you are looking for a specific fix. Unfortunately, if you are someone with allergies or conditions known to affect how you metabolize drugs, this can put you on the wrong side of the medical stereotype. React badly to morphine but not dilaudid? Clearly, you just like the high better. Don’t digest oral medication properly? You must just want to get high quicker.

Part of the problem of course is that there are not many other treatments available. Frustrated about the fact that doctors where ignoring what I was telling them, I challenged them to come up with a solution, other than sub-Q dilaudid, that would deal with my pain. The caveat of course being that oral medication doesn’t metabolize properly in my body. I suggested sedation, nerve blockers, patches, a bunch of “other” options all of which were shut down by the doctors. It was only once they realized that they had no other options, that I started receiving regular care.

  1. Mental Illness

I discovered this one when my visit to the weight management clinic was listed as a psychiatric visit. All of a sudden, rather than being asked about what symptoms brought me to the hospital, I was being grilled about what was meant by Psychiatric visit. If you are mentally ill in any way, be it depression, anxiety, any type of cognitive disability, schizophrenia, bipolar disorder, whether treated or not will make your visit more difficult. The assumption is that if there is anything wrong with you mentally, you cannot be trusted to give an accurate assessment of your condition. Your pain? It must be all in your head. It doesn’t matter that you have a diagnosis for Crohn’s, because everyone knows that crazy people are crazy and can’t be trusted.

Many doctors will assume that people with depression or other illnesses want to self-medicate their pain away. Why deal with crippling emotional pain that causes joint pain if you can just take a dilaudid and have it disappear? The fact that the pain caused by depression is just as real as that caused by arthritis is not something that seems to occur to doctors.

  1. Poverty and Stereotypes

If you look poor when you come to the ER, be prepared to face discrimination and assumptions. If you are on disability or welfare, be prepared to have to answer a lot of questions and to be viewed with suspicion. While I have not experienced this personally, if you are a person of colour, you most likely will also face similar levels of suspicion. The stereotypes surrounding poverty and race are such that you always face the risk of being pegged as a drug seeker.

If you are a young person with severe symptoms, especially those associated with age, you can pretty much assume you won’t be believed. I went through this when my leg issue was particularly bad and I spent most of my time trying to get answers from doctors who were more interested in giving me Percocet.

If you are a woman, you also run the risk of not having your pain believed. Although this won’t always get you painted as a drug seeker, at times it can. It results in the same lack of treatment however.

  1. Is your pain right?

One of the side effects of living with chronic pain conditions is that you become accustomed to handling pain. Even at a level 10, I have been known to crack jokes and try to lighten the mood. I can compartmentalize my pain long enough to tell doctors clearly what is wrong with me. I can do this, because I deal with pain on a daily basis. I can do it, because humour can help my pain feel less intense. Because I would rather be clear with doctors, even if it means that once they leave, my pain will feel more intense because of those moments of inattention.

It also means that it takes a lot more pain for me to register it. A level 6 pain for me is comparable to a normal person’s 8 or even 10. Often, I don’t judge whether or not I need to go in based on how much pain I am in, but rather based on where it is, whether it is different, or if it doesn’t respond to my usual treatments. When I go in it is because it is beyond my ability to handle it, or something has changed enough to cause concern. I have had days when I was passing significant amounts of fresh blood, where my pain level was lower than normal.

Although these considerations are normal for chronic pain patients, I still have to perform pain the right way in the hospital in order to be taken seriously. Doctors, especially those who don’t specialize in chronic conditions, have no understanding of what it means to live life in pain. Most people cannot really imagine what never ending pain is like.

Most people have had broken or twisted limbs, cuts, illnesses that cause pain, etc. but in all those cases there is an expectation that at some point that pain will be gone. For people with chronic pain, that expectation is not there anymore. We know that every morning we wake up we will still feel pain. The level might change, and we live for the good days where it is low enough not to be noticeable, but ultimately we know that pain can and will be there at any moment. We learn our pain intimately so that we can sometimes know exactly what is going on at any given moment. So much so, that I have walked into ERs before and told the triage nurse that I had pancreatitis. The tests confirmed this too be true. How did I know? Because the pain was in the right spot, the right sharpness, and the right amount of time away from my last Remicade appointment.

Yet despite my intimate knowledge of my body and its aches, the presumption is still that doctors know better. Since there is no way to measure pain level, I have to perform pain when I show up. Grimaces, moans, groans, shifting position, are all ways in which people can convey that they are in pain. Even if I know which position will yield the least amount of pain, I better seem to have to look for that position because otherwise I must not be in enough pain.

If your test results show minimal inflammation, then it doesn’t matter that you say that you are experiencing level 8 pain. Clearly, you are just sensitive and there is nothing seriously wrong. It can’t possibly be that something else is going on. If you are only complaining of level 6 pain, then it must not really be that serious. It doesn’t matter that you have a chronic condition that regularly has levels of pain such that would break most people, because relativity just doesn’t seem to occur to doctors.

During my trip to the hospital this time around, after the third time a doctor decided that my knowledge of my body could not compete with his medical knowledge and that I would obviously respond to Tylenol this time even though sub-q dilaudid was wearing off after minutes, I completely lost it. I couldn’t take it anymore and quite loudly voiced my opinion of this particular doctor’s skill or, in my perception, lack thereof. Despite the fact that I was clearly hurting and upset, Dr. Ken Doll decided that this was the appropriate time to make a comment about how I could not be in that much pain if I had the energy to yell at him. After accusing him of getting on power trips and making patients suffer, making it very clear that I had more knowledge and experience of crohn’s than he could, and that his condescending attitude fell flat when he was talking to a patient who has some medical background, we finally managed to get down to business. Of course after he apologized and made it clear he would listen.

What does it mean?

If you get branded a drug seeker, getting treatment becomes a battle. It doesn’t matter that tests confirm that something is wrong.  The goal of every doctor in your vicinity will be to get rid of you as fast as possible. Most doctors are already nervous about admissions due to the risk of picking up infections during a hospital stay. If they think that you are also drug seeking, then their desire to get rid of you reaches epic proportions. Throwing up everything you eat and drink? Level 10 pain? Well… do you really need to be in the hospital?

On three separate occasions, after explaining to doctors that I have consistently not responded to oral pain medication, I had to prove that this was the case. Not 20 minutes after speaking to doctors I had the nurse show up to tell me that once again doctors were going to try and have me take oral medication. I would then have to wait for an hour to show that it had no effect. It means an hour of rolling around in extreme pain, because they just need to be sure. It means feeling scared to tell the nurse that you need your next dose of pain killers. It means having a timer set so that you can know when it is safe to ask for more, because whether or not you feel pain is no longer the barometer you can use.

The assumptions surrounding drug seeking behaviour are such that they create a barrier between patients and doctors. This barrier makes it impossible for patients to be honest with doctors.  Even documented diagnoses are not enough to protect you. It doesn’t matter that I have a known diagnosis of Crohn’s. It doesn’t matter that I have had surgery. It doesn’t matter that I have had pancreatitis 6 times and that every occurrence of it makes relapse more likely. Every trip to the ER is an intricate dance where doctors decide whether I am worthy of treatment.

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Ania Onion Bula

Ania Onion Bula

A student of biomedical sciences, psychology, and English literature. Ania was diagnosed with Psoriatic Arthritis in 2006 which resulted in permanent damage to her hips. In 2008 she was also diagnosed with Crohn's disease, along with anxiety, ADHD, and disability related depression later on. She is finishing up a book called Young, Sick, and Invisible: A Skeptic's Journey with Chronic Illness.

Along with writing, Ania also makes her living by selling her Art under the store name AniaOnion Creations on Etsy. She spends her free time reading, and spending time with her dog, two cats, and three turtles, oh, and her Alex.

18 Comments

  1. August 16, 2014 at 9:27 pm —

    That’s horrible! I hope you can find a team of Drs that trust your knowledge of your own body. It sucks that that is so hard to find.

    • August 17, 2014 at 12:28 am —

      I do have a good team actually. My family doctor, GI, and rheumatologist are all fantastic. The problem is when I have to rely on Doctors who don’t know me while I am in the ER.

  2. August 17, 2014 at 6:32 am —

    While I’m very sorry you went through this, I’m so glad you wrote this piece. I worked in the ER for 5 years, and I still get upset when I realize how many stereotypes I absorbed. This perspective absolutely needs to be heard. Thank you!

  3. August 17, 2014 at 10:15 am —

    I also live with chronic pain due to Endometriosis, PCOS and fibroids, and this article is spot on. Especially the part about feeling the need to “perform” our pain for the doctors, and their refusal to accept that we know our own bodies intimately. Thank you for writing this, for sharing what is a very harsh truth for so many people who live with daily pain. I can’t wait to read your book.

  4. August 17, 2014 at 12:55 pm —

    Speak the truth! I have received this treatment before, many times. It doesn’t matter if it is the ER or a pain management clinic or a doctor.

    As a former (pre-disability) social worker, I am all to aware of addiction, drug seeking, biases based on income, race, gender, age and disability. When I first became disabled, I felt that being honest, speaking clearly and with detail and, being educated about my condition and my body would erase barriers and poor treatment. How wrong I was!

    My ability to communicate effectively, my desire to educate myself and, my honesty hurt me more. I have been denied ER treatment and interrogated by the hospital social worker before a doctor would even look at me. I live in pain…6-8 daily. This was mind numbing new pain. I was given the big “F” off and a script for 800 mg ibuprofen. Turns out, I had a severely ruptured, not herniated, disc in my lumbar spine.

    I carry around letters from my former doctor and a State Pharmacy report that covers 2 years. My previous doctor felt that her personal letter of stellar stewardship with my pain medications along with the pharmacy report proving that I don’t “shop” around or fill early would assist me in getting care and good treatment. When I presented these to the ER, I was told they could be fake. When I gave them to my new pain management doctor, I wa given a look that said “these are toilet paper in my opinion”.

    It doesn’t matter that I gave a book of all my records. It doesn’t matter that at 37 years old, I have severe osteo-arthritis completely throughout my spine and hips. It doesn’t matter that the arthritic condition gas caused overgrowth of my ligaments and joints, so much so that my spinal cord is severely compressed on multiple levels.

    On top of all of that, I’m obese. This makes me automatically guilty of over exaggeration, depression and, limitless chastising by the “if you weren’t so fat” or “you wouldn’t be in pain if you exercised daily” medical specialists.

    It doesn’t matter that I have foot drop, leg/foot numbness and I can barely dress myself. Apparently, 3 days a week of elliptical will cure my spinal stenosis, spondyliotheses, collapsed vertebrae, numbness, etcetera.

    Thank you for writing the truth. I wish you the best of luck and the most of each day!

  5. August 17, 2014 at 7:11 pm —

    I couldn’t agree more with EVERY single point you made. I suffer from Chronic Pancreatitis, among other digestive issues. I was in the ER recently and told that, “You’re fine” When I am currently waiting for surgery to be scheduled for my TP/AIT. I am going next month to have my pancreas, gall bladder, spleen, and duodenum removed. They then take the islets (Insulin making cells) from my pancreas and put them into my liver. I will then live without all of the above mentioned organs. My liver will then be a “super liver” and will (hopefully) do it’s job by producing insulin. It can take 3-4 months before they really start working. But it’s all depending on how many islets they can get, and that depends on how much damage I have in my pancreas. I will wake up with a scar across my entire stomach and need insulin. I can’t wait to not have to deal with ER doctors anymore!! P.S. I hope you’re feeling better!

    • August 17, 2014 at 10:13 pm —

      I am doing much better. If I keep getting it your fate might be mine as well. I hope all goes well for you. The fact they can do that with the liver is pretty cool.

  6. August 18, 2014 at 12:35 am —

    Oh can I relate! My two kids and I all have Celiac Disease, my daughter also has endometriosis, and I have Interstitial Cystitis and Sphinchter of Oddi dysfunction. Most drs completely dismiss Celiac because everyone thinks they have it, and none of them have even heard if IC or the Sphincter of Oddi. We also lived dead in the middle of three hospitals, so it varied as to where we would go, depending on which specialist was associated with which hospital. Now we moved to the other side of the state. Because I have gotten into the habit of carrying a file with ALL of our records, including biopsy reports, I am pegged a hypochondriac mother. Because I know which nausea and pain meds work and don’t work for all three of us, I am treated like a drug-seeking hypochondriac. It is SO frustrating! I understand they are under scrutiny and there are alot of abusers out there, but they seem to forget there are a lot of chronic pain sufferers as well!

  7. August 18, 2014 at 1:54 pm —

    After six days in the hospital, recovering from a surgery to remove a cancerous tumor in my colon, I was sat down by a doctor I had never met before. He had heard that I was telling all my nurses that the thing I wanted most was to go home.

    “What can you get at home that you can’t get here?” he asked
    “…well…” I started
    “Is it drugs?” he asked.
    “What in my history gives you any indication that I’m trying to get drugs? And by the way, if you have to ask ‘what are you not getting here that you can get at home,’ there’s no way you’re going to understand my answers.”

    Pissed me off.

    • August 18, 2014 at 6:30 pm —

      Unreal!!! As if you are the first person anxious to leave a hospital and be back in their own home?!

    • August 18, 2014 at 10:27 pm —

      I’d be more concerned if you didn’t want to go home. I mean, there is not feeling ready to go home, but if you don’t WANT to go home, that is reason for concern.

  8. August 24, 2014 at 6:51 pm —

    I have a condition where my brain makes too much spinal fluid. The pressure of the excess fluid gives me massive headaches that often can only be cured with spinal taps. When the pain gets to be too much I go to the ER and experience EXACTLY what you go through. Because you can’t see a headache I’m automatically suspicious. I’ve had this for 15 years and I know exactly what I need at the ER and ultimately what the doctor is going to decide on but if I even hint at that, they look at my like I’m trying to scam drugs. So I sit there and play along. I’ve learned meditation techniques that help me disassociate a bit, it helps with the blinding pain. However, it also makes me sit still and quiet, which works against me because if I’m not groaning and wailing then I must not be hurting that bad do once I get to the ER I stop doing it.

    Ideally, the best thing for the doctor to do is give me IV pain killers and send me home. Sometimes if I can finally sleep, the headache will go away. If it’s not gone when I wake up then I go back to the ER for a spinal tap. I’ve had over 100 spinal taps and it’s caused a lot of harm and scar tissue to my lower back so it’s best if I can avoid them. But I bet you can guess how well this suggestion goes over in the ER. Instead I keep my mouth shut and hope they suggest it on their own.

    Due to the scar tissue a doctor can’t do a spinal tap on their own, they have to send me to radiology to donor minder an x-Ray like device so they can see where the needle is. This hasn’t stopped many ER docs from trying to do it anyway. They say they won’t give me pain medication I less I’m willing to let then try. I guess it’s to prove I’m desperate enough and in enough pain. Even though I always tell them there is too much scar tissue and I need to go to radiology they all think THEY will be the magic doctor who can be successful. But again, I can’t protest too much or then I’m a druggie looking for a fix. Nevermind that it’s additional pan and damage to my body causing more scar tissue.

    Another thing they make me do before giving me anything for pain is an hours worth of IV migraine medication. It doesn’t matter how many times I tell them it’s not a migraine they still make me do it. So that’s an hour more I have to be in pain and additional money spent on medication that won’t work.

    I’ve even been told before that I was wasting the doctors time and taking up a bed from someone who actually needs it. Going to the ER or doctors office should make you feel better, but for me the prospect just makes me feel more anxious.

    • January 9, 2016 at 1:20 pm —

      I know your pain. Pseudo Tumor is one of the worst pains that one can imagine.  Your brain is being crushed by cerebral spinal fluid.

      I know Doctors want to weed out the drug seekers but those that have invisible illnesses (PTC, fibro, CRPS, migraines) cannot point to a spot really and say it comes from there.  PTC, Fibro, migraines and CRPS usually have no usual significant signs that can be readily seen.

      I go to the same ER most times and my Dr is on their staff but until she calls and says “Yes, she really does have XYZ, so give her pain relief” they hesitate.

      I was recently admitted for a hemiplegic migraine at a local hospital where I spent 4 days.   Since my Doc and Neuro wanted results of my tests I obtained a copy of my med record.  The neuro on staff at said hospital stated that he thought I was exaggerating since I have a history of depression.

      I am still offended and in speaking to my neuro was told that this punk neuro doesn’t deal with migraine on a daily basis and therefore was an idiot.  Yes, my neuro called another doc an idiot for stating such a vile thing since even I took picture of the visible effects of the hemiplegic and since it looks like a stroke (flatness of the face, difficulty swallowing, slurred speech) and this neuro tried to blame it on a mental illness.

      I hope you gt better ER docs soon.  PTC is terrible. (I thank the gods everyday I don’t have an episode)

  9. August 24, 2014 at 7:13 pm —

    Gah…stupid autocorrect. The third paragraph this sentence: “they have to send me to radiology to donor minder an x-Ray like device so they can see where the needle is.”

    Should read: “…send me to radiology to do the tap under a x-Ray like device…”

    Sorry, fat fingers.

  10. August 24, 2014 at 10:56 pm —

    Thank you! Thank you! Thank you!

    Endometriosis and 7 pelvic surgeries later, I too am a chronic pain sufferer. I have been labeled a drug seeker and therefore refuse to go to ER. The last GYN I convinced to go in and ‘look’, told my husband I was going to get into serious trouble because the endometriosis and scar tissue had cut off the bowel and glued all the intestines to the abdominal wall. She told him she had NO idea how I was standing, much less functioning. The depression is horrible and I would give anything to be pain free. 🙁 I hate being drugged but a level 10 is what I live with if I have no meds. I believe I would rather kill myself than live a life of 10 on the pain scale.

    Thabk you for sharing your story. Makes me feel less alone knowing there are others just like me.

  11. […] heavily on her own experiences as a chronic pain sufferer, Ania Onion Bula has penned a great list of factors that lead doctors to peg their patients as drug fiends, justly or […]

  12. January 6, 2016 at 1:40 pm —

    Thank you for writing this, and for writing it the way you have. It doesn’t smack of bitterness or of retaliation toward the medical community, but is simply a factual telling of how things are for so many of us who are struck with chronic illness and who must – for one reason or another – depend on the ER for treatment from time-to-time. Now, if only we could get those ER docs to actually LISTEN to what you are saying here…

  13. January 8, 2016 at 3:59 pm —

    As an ER nurse I am very familiar with this discrimination. I have seen a doctor ignore chest pain (that ended up being a heart attack) just because the person had an abuse problem in the past. I also sympathize with you in that I am also young and have a chronic autoimmune condition, it is miserable feeling old when you’re young! Especially if you don’t “look” sick outwardly! In case you get fed up with traditional medical care, I highly recommend you look into the autoimmune protocol- check out thepaleomom.com under autoimmunity. I have had great success using nutrition to help improve symptoms, I have also cut way back on medication. No pressure, but in case your looking for something different!

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