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.
- 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.
- 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.
- 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.
- 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.
- 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.