Health professionals love placing patients into boxes and labeling them as x,y and z whether they are conscious of it or not. I'm sure it comes about due to their studies and for clinical reasons. I saw this when I was working, but I did not fully realize the effects of it on the patient until I became one. What health professionals don't realize is that this hurts patients and hinders their recovery and healing. Especially when in the same breath they tell you “all stroke patients are like this'' and “not every patient is the same”. For me, this whole journey has been frustrating and I have yet to figure out what frustrates me the most. Though, I would have to say the boxing up and labeling of me has got to be in the top five at least. From the beginning, I have had to fight back against physicians, aides and various hospital staff for giving me labels and placing me into boxes I do not belong in. Being a patient is hard enough, even without the labels it is extremely degrading and dehumanizing in certain situations. This infuriates me mostly for others who have no ability to verbally communicate. Luckily, my stroke was in a location that didn't effect my ability to verbally communicate, and I fought for months to be heard by my medical team. They didn't listen to my words. Can you imagine what that means for those in my ward who did lose their ability to speak?
Many people in the disabled community and chronic illness community like to remind each other that we hired our doctors so we can also fire them, however in certain situations, you're just stuck with the medical team you unwillingly inherited. You can make all the noise you want but it will not cause them to treat you or help you any differently.
In my particular lived experience, I was told that patients who suffered a stroke in my specific area exhibit certain behavioral changes, such as excessive crying. They then would put me into situations where I would cry, to prove to me how easily I cry and am in fact damaged from my stroke. This is very similar to an abusive partner, no? My favorite and least favorite moment is when they tell you how each stroke patient has incontinence so they can avoid taking you to the bathroom by slapping on an adult diaper on you and then making you sit in it until its the time of day where they do their diaper rotation (hello, UTI’s!!). I, however, did not have this issue and would request that they let me use the restroom so that I could pee in the toilet like I have been doing my entire life. I waited up to two hours once. All I needed them to do was open the safety latch because I worked hard in physical therapy to learn how to transfer myself from my bed to the wheelchair and then from my wheelchair to the toilet. My PT(physical therapist) signed off that I was cleared to do this, so liability was a non-issue. They wouldn’t come and didn’t listen to my voice, which led me fending for myself through action. At a certain point, I couldn’t handle it anymore, so I became very, very petty because I was not going to suffer consistently from preventable UTI’s. I would pee my pants which then forced them to do more work than opening my safety latch, by cleaning both me and my bed.(sometimes we've got to learn the hard way, right?) Once I became more physically strong, I would find ways to crawl out of my hospital bed or open the safety latch myself. My mother also moved into the hospital with me at one point so I no longer needed to wait for hours or to fend for myself. Before you go defending the aides for not coming to do the smallest task ever, you should know that they weren’t coming because they wanted a smoke break or something unrelated to their job of taking care of paralyzed patients in the neuro-ward. Their favorite defensive argument was “YoU’rE NoT ThE OnLy PaTiEnT”(‘Strong argument!’ she muttered sarcastically under her breath as she continued to pee her pants).
I recognize to many I seem like the epitome of the nightmare patient that you can’t wait to discharge, but I urge you to take a step back and reassess what you’re reading. I urge you to push for policy reform so that patients have the adequate care they deserve and so that staff have the proper training and support. We, the patients, aren't there because it's a fun pastime. We are there because we were thrust into a nightmare situation that forces us to be there, if we want any chance of coming out of the nightmare. We deserve to be treated with dignity and respect. Just because our bodies do not physically work does not mean we are unimportant members of society which you can take advantage of. That statement extends to all patients everywhere and especially to my fellow marginalized, disabled community members. For this reason, I share my embarrassing story of peeing myself to receive proper care. I won’t stop at that. I will use my voice to make change. If you're a healthcare provider or politician reading this, I urge you to use your power to make positive change in this broken world.
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