A Letter from a Chronic Disease Patient to a Doctor

This blog post is largely written in response to “A letter to patients with chronic disease” published here.

Greys cale photo close up of stethoscope

You say we scare doctors. We bring them to the limit of their knowledge and force them to confront it. I have to say I think doctors scare me more than I scare you. When you’re health is chronically ill, you have a lot more to lose if it’s a bad match between patient and doctor. You have to recognize that you’re not a god? My body tells me that daily. You risk spending time with a patient whose body will not praise you with recovery. We risk our health and lives and progression of disease. If you’re scared, I’m terrified.

What’s more, I don’t think we scare all doctors. Some, like you, are probably scared. Some are repulsed. Some are busy. Some don’t care. Some are openly hostile. Some diagnosis us as “fat”. The deferential approach outlined below may work with some doctors like you, but other doctors will think it means we don’t care about our health or that our symptoms are not as serious as they are.

We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

We are not stubbornly denying you the security you crave or the miracles you want. Our diseases happen to us, not at you. No one is as frustrated by my disabilities as I am. No one wants a miraculous cure more than a patient who has exhausted every resource and still isn’t better. If you can’t see us as on your side against our disease, you’re going to have a tremendous problem treating us.

When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.

Do you imagine for one moment that illusions of control and power have not been shattered for the people living in broken bodies and with broken minds? Do you imagine we do not get angry, feel insecure, and wish that we could move on? Can you hear how self-interested your desire to fix, save, and impress an easier patient sounds? I don’t want to have to know or care how my doctor feels about a disease I live with every day. I’m seeing a health specialist for my benefit, not theirs.

It feels profoundly lopsided and unbalanced to ask emotional labor of chronically ill and chronically exhausted, frequently impoverished people. Especially at their doctors office, where they have insurance and medications and prior surgical history to keep track of, as well as whatever brought them in to your office that day. I’m sorry my IBS doesn’t make you feel super human; imagine what it does to me.

You offer some general advice to patients – that we don’t come on too strong, show respect, forgive our doctors, but don’t work with jerks. Sadly you didn’t give very concrete advice here that may have helped. How can a patient tell which doctor is having a bad day because they feel existentially insecure in the face of my body and just needs a few years and some forgiveness, and which ones are jerks who don’t care and don’t respect their patients? Some specific examples or guidelines would have helped here.

I’m not entirely sure how much this advice will help. It certainly seems to take the focus away from the patient – the one with a chronic and serious health condition which has led them to seek out medical care in a capitalist for-profit medical system – and place it on the secure person in the scenario, the one whose health is not at risk and will not be jeaopardized if the relationship is out of balance.