We all know our healthcare system is not great, along with all else in this country at the moment. As a trafficking survivor, informing my doctors of such is something that seems pertinent to a healthcare provider especially given my specific experiences. My primary care doctor took the information and uses it appropriately, to make informed decisions about my care. He occasionally asks how I am doing with self-harm as it is one of the things that is important to my care. And he asks due to real concern and desire to support in the best way possible not for any malicious reason. This is the same doctor that has filled out all of my paperwork for short and long term disability though my job since my strokes. And the same doctor that is temporarily handling my pain due to issues with my pain specialist that I will discuss. My primary care doctor, is by far the best doctor that I have ever been seen by. He has been my doctor for about 2 years and will be until he no longer practices.
There are several things that work against me in terms of healthcare aside from being a trafficking survivor; I am a woman, I am plus-size, I am gay, and I had strokes at 25 years old. The only thing in my favor is that I am white, my whiteness gets me to be listened to even if not necessarily heard. My whiteness gets me to a room in the ER whereas the black woman across from me who’d been there for hours with a VISIBLE ailment was still in the waiting room. Our healthcare system was built by middle aged white men FOR middle aged white men.
Rewinding a bit to being in the hospital with my strokes for most of July 2017. While in the hospital I spent one night in the ICU (intensive care unit), 5 nights in the IMCU (intermediate care unit) and several in the stroke/neuro unit. During my stay I saw several neurologists as they do rotating shifts and they all thought I was being dramatic, if not for the scans I do not think they would have believed me at all. One neurologist in particular, ordered a psych eval because she literally thought I was crazy, this is what she told the psychologist. The psychologist and I had a good talk though, about my history being a trafficking survivor and with self-harm and my mental illnesses. We talked about the fact that my anxiety is a contributing factor in my pain and vice versa, which I stated not the psychologist. I think that is when he realized the neurologist was being judgemental and not professional. This is also the neurologist that withheld all of my medications for almost a full 24 hours including the blood thinner that I was put on because I almost died. This is when I was labeled drug-seeking because I was in pain. As if a tear in ones artery isn’t painful!
As someone with chronic pain, I learned quickly that you almost have to play dumb when it comes to medications otherwise you are seen as drug-seeking. I was diagnosed with fibromyalgia originally in 2011. This was the beginning of my journey with a diagnosis of something that, at the time, I didn’t know was not seen as a real disease. Since then so much has happened resulting in many other diagnosis, a multitude of ER visits, and several specialist visits. I taken about 100 different medications through the last 7 years, most of them not working. Each time I’ve seen a new doctor, it’s been the same introduction, leading with my trauma history, into the laundry list of diagnosis, my current medications and providers, and lastly what I’m seeking from them. This last part is where you have to watch what you say. You can’t go into a doctor and state you need pain medication or even an antibiotic. This request has to be thought about, refined, and stated in a ‘correct’ way. If you get upset, cry, or seem anything but calm, cool, and collected you get labeled as dramatic, drug-seeking, and crazy.
The dreaded pain scale. Anyone who’s ever been inside an ER knows what scale I’m talking about. This 0-10 pain scale is what is standard in our healthcare system, 0 bring no pain, and 10 being the worst pain imaginable. First off, as humans, I don’t think we ever have a 0 level pain, not this day in age at least. Secondly, they define worst pain imaginable as someone sobbing not being able to make out words and curled up in the fetal position. Yet, if you present like this you are told to calm down and use words and if you don’t talk to them they can’t help you etc. Then you are labeled as dramatic, drug-seeking, and crazy as mentioned above. So here we are at this crossroads of a no win situation. When you factor in chronic pain, you have to take in consideration the definition of chronic which is something that is never ending or relentless something that has lasted for more than a few months. When one lives with this pain, they develop a higher pain tolerance the longer they live with it. That being said their pain scale changes, when comparing the pain of someone with chronic pain to the pain of someone without is not only unfair but also unrealistic. Those of us live with a pain level that is higher than most people could function with. For example, my average pain level on this arbitrary scale is at 8 but in reality when compared to someone who doesn’t have chronic pain it would probably feel like a 12-15.
Navigating the healthcare industry is a minefield already, and then you throw in Donald Trump’s election, the healthcare “reform” he’s done, and the laws he’s set in motion in terms of discrimination make this an impossible task. This has given doctors the ability and validation to be jerks. This has allowed them to label us as these things and corner us because of the things we have no control over with no legal recourse. Slugging through this broken system is dangerous, anxiety inducing, and costly. Please take someone with you when at all possible so you not only have a witness but also someone to help you remember what was discussed in terms of treatment.