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What It’s Like When Doctors Blame You for Your Chronic Illness

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I should be used to the routine by now. Checking into the doctor’s office, I am always measured. My blood is drawn. My blood pressure tested. My weight checked. And then I wait for the doctor to see me.

I wait, and my body reacts in the same way it does before a job interview or public speaking: fight or flight.

My heart races. I’m nauseated. My hands turn cold. I have to visit the bathroom repeatedly. I could never be an adrenaline junkie; it feels like poison in my veins.

It shouldn’t be this way. Health care is supposed to take care of you. Instead, I wait to be scrutinized, assessed and judged. I wait to be told I am failing.

The truth is, my body is failing me. My immune system has gone off the rails and lost its way. And, I am suffering because of it.

The truth is, medicine is failing me. I have swallowed countless pills, given myself numerous injections and been hooked up to IV drips for hours — all in hopes of suppressing my immune system’s relentless attacks on my joints, nerves and anything else it wrongly sees as an enemy. There has been some improvement in my lab results, so my doctor tells me, but the pain and fatigue still feel endless.

The truth is, my doctor is failing me. Because although her eyes are kind and her tone is sympathetic, when she doesn’t see the results she expects, when I don’t tell her what she wants to hear, when she can’t explain why the medicine isn’t working, she blames me.

“I see your weight has gone up.”

“Yes, I know.”

“The weight increases the stress on your joints.”

“I know that, too.”

“Maybe watch what you eat a bit more carefully. Try to get more exercise.”

“Yes, I know. I’m trying.”

“I know it’s hard.”

But she doesn’t know. She can’t understand what it’s like, to struggle through each day in a haze of unpredictable pain. To force your body to move when every part of you aches and burns. To muster enough energy to do the simple, easy things: cook a meal, fold the laundry, clean the dishes, walk to work. To wake up on the mornings when even getting out of bed, taking a shower and getting dressed seem like insurmountable obstacles. To have to smile through it all and tell everyone you’re “fine.”

She can’t appreciate the triumph of pushing through it all to get on the exercise bike, lift the weights, swim the laps or walk the miles. The stirring high of winning these small battles. The brief moments of feeling strong, almost “normal.”

She can’t see how much these short-lived victories cost. How defeated I feel on the days I can’t make my body perform. What it’s like to fight every single day. She doesn’t understand how crushing it is to be told that despite how hard you fight, you are losing the war.

“Your weight has gone up.”

“I know.”

“Studies show being overweight increases inflammation. The inflammation is what we’re trying to control. It’s what causes the damage.”

She doesn’t finish the thought, but it’s loud and clear: It’s your fault you’re sick. It’s your fault you’re in pain. You are to blame.

Never mind that the symptoms of my illness first appeared when I was 70 pounds lighter, when I was the most active I’ve ever been in my adult life.

What she says is true, my weight is undoubtedly hurting me, but it’s not the whole story. It’s just the part that makes her feel better about herself. It’s the part that eases her conscience and restores her confidence in her medical acumen.

I know this about her, about so many doctors, but I still walk out of the office with my skin crawling with guilt. I question every choice I have made trying to cope with this disease. I believe in my own culpability. I flagellate my weak will for bringing this on myself.

Does the doctor understand her condemnation, implied though it may be, only feeds my despair? Does she realize, telling me this is as good as it’s going to get, is telling me I am not good enough? No one knows why autoimmune diseases strike one person and not the next, but does she know the message she delivers is, I deserve it?

Getty image via tommaso79.

Originally published: October 25, 2019
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