Dear Healthcare,

My body already doesn’t feel like it belongs to me at the best of times. Whether it be emotional or physical changes due to medications or simply due to a physical condition, I almost never feel in control. This is never more true than during medical appointments. I have encountered just one doctor throughout my life who asked for permission before each and every single thing she did. Even the small things: touching my shirt, touching my arm, taking a blood pressure. That made me feel like I was a human being who had autonomy over my body and all its parts. It made me feel like I had a part to play in my health rather than being someone’s science experiment. Those are the little things, which most people just take for granted at a typical appointment. Of course the nurse can take my blood pressure, otherwise why am I here? That’s not the point. The point is she is taking MY blood pressure. MINE. Therefore, I should be the person who decides when this happens. 

During some appointments I don’t even feel human anymore. I am being moved around, poked and squeezed without ever having really understood why, let alone given my permission.

I believe this should be the standard throughout medicine even for young children. A lot of my medical trauma originates from being held down at doctor’s appointments as a child, not given a choice in what was happening to me at all, and not understanding why it was happening. Of course children cannot give their own full consent for major surgery or treatments because they are unable to understand the full consequences or their situation like the adults and medical professionals around them can. However, within these things there is still room for discussion and asking permission. Furthermore, in non-life threatening instances and/or casual check-ups there is definitely flexibility to have those conversations with parent, child and doctor/nurse. 

Especially when there is anything that involves touching a child (or anyone’s) body it is crucial that they understand at their level 1. Why this is happening 2. What is going to happen exactly 3. That they say yes this can happen now. If they say no this cannot happen and are in a calm frame of mind, maybe it doesn’t need to happen right then. Maybe it can happen in a few minutes after a deep breath or a little further conversation. 

It often surprises me that in 2022 healthcare professionals still don’t see the need to ask. They say to me (as an adult) “this is what we’re doing” “lie down” “put your arm here” etc. The other day, my arm was grabbed and forced over my head without even asking me to move it first or asking my permission to do so. This upset me greatly. If I had been calmly asked to move my arm I would have moved it, of course. If they had asked permission to position it for me, I would have let them. The way they chose to do it has a bad outcome for me mentally (and physically because it’s uncomfortable). 

Consent, permission, discussion, patient inclusion, all these things and everything associated with them are crucial for a kind and compassionate healthcare experience. It can make it not only smoother for the patient but also for the provider as well. Fewer screaming children or tearful adults, such as myself, and better outcomes in the long run. The doctor’s office does not need to be a place children, teens and adults alike fear because they are going to get restrained and hurt by scary people with scary devices. There is another way. Adults don’t have to feel that fear either, whether it be with them from childhood or newly-acquired from a recent procedure. This way, people are more likely to attend their cancer screenings and other vital appointments and to engage positively with the healthcare field throughout their life. 

So, if you are going to touch someone else’s body or do anything else to it and that person is conscious, ask them for permission. Explain what is happening and why and allow them to have the control of saying yes or no. 

Dear Emergency Room,

Another trip to a hospital. This time the Emergency Room. It’s fair to say that when you are in an ER at 2 am, you are not feeling, looking or acting your best. You might even be terrified out of your mind thinking that this is finally going to be something really really bad.

That was me the other day. I was in so much pain. I was crying and upset and scared and tired. I was in a strange city in a strange hospital, my family thousands of miles away. It took many people, many hours, and a few drugs to calm me down. But even when I could breathe again I was still an anxious mess. I wanted to go home and be in my own bed but I also wanted the pain to go away. That catch-22 you are always in when you find yourself in the hospital.

Many hours into my stay someone knocked on the door. I thought it was the nurse with more medicine but actually it turned out to be even better. It was another member of staff who peeked in and said “I saw you were missing a pillow, I’ll bring you one.” At first I didn’t really care. That’s very nice of him but it’s not exactly pain meds. But that pillow was the beginning of me getting to be calm. The comfort that it gave me in being able to relax my head and feel a little more protected, changed more than I would have ever thought it could. After that I realized that the person who had seen me as a person on a mattress without a pillow and actually bothered to go find one for me was the true hero of the day. They had taken into account the discomfort that arises in those situations outside my immediate medical emergency: the discomfort of the hard bed, being away from home, being cold and feeling exposed. That meant so much.

The technician who came in to take me to my scan a few hours later had the same kindness in his heart. He gave me a warm blanket while I was in the machine which he then covered me with afterwards back in the room. It was your typical scratchy hospital blanket but it was warm and it symbolized so much more. Those people could see I was scared, I was vulnerable and I needed comfort. Many people can see that without acknowledging it and not even get close to trying to solve it because that is a lot to ask, especially in an emergency room setting. They are busy and see hundreds of people like me and in much worse condition every day. But that night, that person gave me that extra bit of comfort and it made more of a difference than I could have thought.

Again, it wasn’t because it was my favorite duvet from home or anything, it was the consideration, the understanding and the kindness that the gesture of these items showed me. It gave me a more human connection to the people treating me and gave me “tools” to be able to be calm because I could rest a little more, feel some comfort and be warm. That night I felt the warmth not only from my pillow and blanket but from the people who brought them to me. Thank you.

Dear Doctor,

Dismissing my Pain Won’t Make it Go Away.

As an otherwise young and “healthy” person, nobody wants to admit that something could go wrong. This includes the various healthcare professionals that I have seen as mysterious symptoms began disrupting my life three years ago. These unpleasant and often hostile meetings with the healthcare system left me with deep distrust and instinct to avoid them at all costs.

However, when I was struck by the most intense pain I have ever experienced, my fear of what the pain might mean sent me to the place I had come to avoid. There comes a point where you are hurting so much that you know you can’t actually solve the problem on your own. By my slightly messed up standards that point is quite extreme pain. This sudden attack of pain was the kind that makes you scream out loud and writhe on the floor. It was the kind where you instinctively make a fist and curl your toes inwards. I was unable to move or speak and I could feel tears covering my whole face although I couldn’t remember when I began to cry. After half an hour I blacked out, whether from the pain alone or something else, I don’t know. It was bad enough to scare the people around me, and they were the ones who made the decision that someone had to intervene.

The intervention did not go to plan. The doctor wasn’t able to see me for another few hours. By that time, I still couldn’t walk or stand unaided but the scream-inducing sharpest parts of the pain had subsided with help from an unhealthy amount of painkillers. I described the incident to her and she simply looked at me and said “when is your period due?” I chuckled a little and tried to explain that this was not a cramp. This was the most intense pain I had ever felt. But I answered honestly and said it could come within the next few days. Wrong answer.

The scariest experience of my life was now downgraded to me overreacting to period cramps. The conclusion being that I needed to toughen up a little. The way I was treated that day only served to confirm all my previous experiences. Treated like a hysterical young woman being overdramatic about something as normal and simple as period pains. Treated in a manner that told me I was wasting the doctor’s time and I should feel guilty about that. Sent away feeling humiliated and beginning to doubt myself- wondering if I really was just being silly. I wasn’t offered any kind of exam, follow-up or other kind of consultation that may lead to my pain being reduced.

Since then I have had three more of these attacks. Nothing that am able to do at home can make the pain subside, I just have to wait it out. But a medical authority figure has told me that I am being dumb, and it’s nothing. Just because she said it was nothing, didn’t make it go away. It just lessened what tiny bit of faith I had left in the system that is meant to help me, and discouraged me from seeking help another time. In fact, that visit made my life in the long-term worse rather than better.

Being dismissed when you are at your most vulnerable, and being treated as someone who is looking for attention, being overdramatic or wasting the system’s time, hurts. Perhaps the answer to my problems is very simple and a pill could change my life for the better. But without someone who listens and cares and believes me, I might never know.