An Open Letter to the Medical Profession

Dear doctor,

I don’t know if we should be together anymore.

I’m tired of fighting. I’m tired of feeling like I need to put on my armour every time I see you.

I know you think that I don’t respect your knowledge, but I do. You know so much more about the human body than I will ever know, you can see things that I will not notice, you can interpret and piece together a picture in ways that I cannot.

And if anyone has a chance at making me better, at finding treatments or even coping mechanisms that help manage my symptoms, it’s you.

But right now, something’s wrong.

Every appointment is a battle. A battle of wills, and a battle in power dynamics.

Everything I read about doctor-patient relationships, especially in the world of chronic care, tells me that I need to advocate for myself. I need to be assertive, and show just how much pain I’m in. But at the same time, I’m not supposed to let it become personal. I’m supposed to remain detached in this conference over my body and my life.

In short, I’m supposed to yell and scream and also quietly shake it off.

It’s an impossible tight rope to navigate. I have made lists before appointments, and refused to leave until I made my way through them. I have remained calm. Even when feeling personally attacked, I have never raised my voice, lashed out, or cried in an appointment.

I have tried so hard to be a model patient, but it’s just not working.

Something has to change. I’m so tired. I feel so alone.

My body is doing wild things. It’s been flipping my life upside down for years, and it’s scary and hard, and isolating and exhausting.

I get that. I expect that.

And I know that I have to fight all of those things. I have to dig in and work hard to live my life in a way that makes me happy.

I’ve come to terms with that. Or at least, I’m trying to.

But the thing is, I already have that dysfunctional relationship to work on.

I don’t need another.

You are supposed to be there, on my team and by my side, helping me manage my body.

I want to leave my appointments feeling supported. I want to rush to see you in the bad times, because I know that you’re there for me in this battle.

Right now I don’t feel that way.

Right now, not only do I have to fight with my body, I have to fight with you too. I have to convince you to believe me, and then to help me. I have to push you to run tests and try new medications. And then I have to go home and mop myself up, taking care of the self-doubt and frustration.

And that’s not okay. That’s not fair.

Because really, we should be a power couple. My excellent communication skills and awareness of my body partnered with your knowledge and resources - we should be kicking my condition’s ass together.

And I don’t think it’s either of our faults, not really.

But I do think we need a change. We need to change the way we react and relate to each other.

We need to stop yelling - at each other, at least. Because if both of us are yelling, then neither of us can hear the other. Finding our voices is important, but so is sitting back and listening.

We also need to stop shaking things off, just a little. We don’t have to like each other, or be friends. But we do have to support each other, and know that what we are doing matters. We’re a team, and teammates don’t just let each other go.

I don’t want to break up. I think we can make it work. But if we stay together, things have to be different. We both have to make an effort, and recognize that trust takes time.

We have to truly to commit. Both to each other, and to our mission. We have to have each other’s backs and keep pushing, keep fighting, together.

If you still believe in me, in us, then let me know and we'll find a way to make it through.

But if you don't, I’m going to start seeing other doctors.

Because I need a partner. I deserve a partner.

And so do you.

Sincerely,

Your patient.