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Why I Gave Up Trying to Be the 'Good Patient'

We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow take their first steps. The child born four months premature struggles through developmental delays and numerous surgeries but they are brave and strong to a fault.

That’s not real life. Consciously, we know that those people are likely the exceptions, if they even exist at all. But that doesn’t seem to stop us from feeling like we have to live up to the heroic facade of the virtuous sick person.

As a person with a chronic illness and undiagnosed medical conditions, I often struggle with the idea that I have to be a “good patient.” I must be gracious and kind when people ask me if I’m feeling better. I must never ask my nurses for too much because I am not at an immediate risk of dying. I must never, ever, under any circumstances, argue with my doctor or push too hard for the care I have every right to access.

I realized recently that I was feeling irrationally guilty for utilizing medical resources when I do not have a fatal disease, and because of that guilt, I was tiptoeing around my own health when I needed to be a loud advocate.

Here is why it’s important to let yourself be the “Bad Patient”:

1. Nobody can advocate like you can:

You may not be a doctor. You may not be a nurse, or a pharmacist, or a research expert. But you are living in your body. You can’t leave it, and nobody else can know your unique experience. If you feel off, or sick, or have an ache, or something isn’t working the way it should, you will be the first one to know.

2. Someone is being paid to take care of you:

It is your doctor’s or nurse’s job to treat you. They get paid (often rather well) to diagnose your illness, and find the best possible way to improve your condition. Oftentimes I think many of us fall into this trap of being so grateful for what they do that we forget: they make money. That isn’t to say that doctors and nurses aren’t incredible and selfless people. Just a reminder that they have a responsibility to care for your body, the same way your accountant is meant to do your taxes, your barista is there to make you coffee, and your mechanic is trained to fix your car.

The only difference is that your doctor provides a 100 percent necessary service — that of keeping you alive, and as functional as possible. I think we often let society’s reverence of health care providers make us think we would be disrespecting them by speaking up, and we risk our health to do so.

3. The squeaky wheel gets the grease:

I hate to be cliched, but when it comes to medical care this is often very true. When we don’t speak up, we get lost in the immense shuffle of the medical system. Perhaps patients that fight back are annoying, and dramatic, and pushy, but frankly? I don’t care if people call me annoying, dramatic, or pushy so long as I’m being listened to.

It’s not OK to be rude, but it is important to speak up. There have been moments when I sat in a hospital bed afraid to even ask for a blanket for fear of imposing. I have sat in bright rooms afraid to ask if I could shut the lights off. I have knelt on the hospital floor puking into half-full garbage cans because even though I felt it coming I was afraid to ask for help. So many of my doctors and nurses have been wonderful, but they can’t read my mind. Even the best health care provider needs you to talk to them.

4. We are stronger together:

When we speak up about our chronic illnesses, we may find that there are so many people like us out there. We may find strength and support in strange places, from friends we never knew were struggling, or from strangers in passing. We get to compile our individual knowledge and strength into something so much greater than we are.

Until recently I have let my fear of speaking up become a barrier to receiving proper care. I am no longer willing to sit quietly and let my health rest in the hands of others. I feel liberated. The guilt is slowly lifting off my chest, and I am learning to use the voice I was born with.

We are born crying, gulping for air, demanding attention to our needs. Why then, do we allow ourselves to shrink like wilting flowers, fading into the background of our own stories?

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