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What Doctors Need to Understand About Chronic Pain and Anger

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Dear doctors,

I’m chronically ill.

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Sometimes, I’m very angry about it.

This can cause misunderstandings with medical professionals.

Med school will give you an incredible amount of knowledge. It’ll teach you the ins and outs of the human body. It’ll make you qualified to diagnose and treat diseases. All good things.

But it can’t teach you what it’s like to be young, undiagnosed and in huge amounts of pain. It doesn’t give you a glimpse into a patient’s private life, where you can see them clenching their teeth in the middle of the night, trying not to cry out in pain and wake their family up. You don’t see them collapse on the stairs or fall asleep at 5 p.m. Med school can’t teach you what it’s like to have  your “friends” abandon you one by one, or what it’s like to be stuck in bed while everyone your age is running free outside. It doesn’t teach you about ableism – how you’ll never be seen as enough. You don’t know what it’s like to be called an “attention-seeker” or “over-reactive” by doctors, when you’re walking around at pain levels they can’t understand.

It’s like being erased, slowly. Screaming at the top of your lungs for help, and hardly anyone can hear you. Many of those who do think you only want attention, but that’s the last thing on your mind. You just want a smidgen of relief. Someone to wrap their arms around you and say, “I believe you.”

Med school doesn’t teach you what it’s like to have every single choice analyzed and corrected by strangers in white coats:

You expect too much. You expect too little. You need to socialize more. Don’t talk about your pain. Be happy – but not too happy, because no one with a real chronic illness could ever have a good day. If you’re angry, you’re a “bitter, over-emotional” woman. If you’re not angry, you’re an “emotionally constipated” woman. When you are visibly in pain, you’re exaggerating for attention, but if your pain is invisible, you’re lying and it doesn’t exist. So, from any angle you look at it, you’re screwed.

By the way, have you heard of this thing called yoga? Or, my personal favorite, there’s this magic, exotic substance called water. I’m sure you’ve never heard of it but let me enlighten you. It cures every ailment known to man. Drink enough of it and all your chronic pain will disappear. 

In short, passing med school doesn’t guarantee you know what our lives our like.

No one can be empathetic if they don’t even understand what there is to be empathetic about! That’s the problem with many doctors – they fundamentally do not understand life with chronic pain, so they cannot empathize.

You could be a genius and have a medical textbook memorized, but if you can’t step into another person’s shoes and think about what it’s like to be in pain all day, every day… well, then you’re not going to be very good at your job.

I know (as much as I can know) that being a doctor is hard. I know people are constantly complaining to you and about you, and that you work long hours. You’re under-appreciated, overworked and you may have a mountain of debt from medical school.

But please.

Don’t forget about us.

We just want to be heard. Believed. Acknowledged.

Don’t brush us off as “head-cases” or “over-reactive” or “attention-seekers.” We’re human. We’re struggling. Sometimes, we’re angry about living in pain 24/7.

Would you be frustrated? Bitter, even? It you had to go through years of doctors telling you, “It’s all in your head,” when you were in pain day in and day out? Wouldn’t you break down crying sometimes, if you woke up in pain. Every. Single. Damn. Day. Can’t you imagine the emotional toll it might take on a person?

Imagine, too, the grieving process as a person begins to accept their new reality. Even if we were born like this and don’t remember ever being well, don’t you think that it weighs on us? Knowing there will never be a cure or, for some, any substantial relief? Wouldn’t that affect your mental health?

Why is it that any time I express anger over what I’ve gone through, medical professionals get upset, as if I’d personally insulted them? As if I have made up reasons for being angry? As if I am living in a fantasy land?

Let me tell you something, I am not holding a grudge against the medical community. I’m angry, yes, and with good reason, but I’m not irrational.

I know doctors are only human.

I just wish they acknowledged that they can make mistakes.

That they don’t always know the answer.

That maybe, just maybe, the patient is worth listening to. That the patient is not someone to be written off or ignored. That their pain matters.

And I know all of this may sound foreign to anyone who hasn’t experienced what I have. That it might sound bizarre. Like I’m talking about a different universe. I’ve tried to explain the best I can, but I’m afraid it won’t be enough.

Many of my able-bodied friends have looked at me with sympathetic but confused expressions. “What do you mean doctors don’t help you? That’s kind of what they do.”

For someone like me, whose medical journey has spanned years, I haven’t really been helped. I know sometimes there is nothing to be done. That doctors may have limited treatment options. I understand that.

I just wish they understood that my strong emotions connected to chronic illness are not some twisted “proof” of “mental instability.” They’re just a part of life with a game-changer like chronic illness. I’m just as human. Just as valid. Just as normal (whatever that means) as the rest of you. I don’t want to be treated with kid gloves. You don’t need to tiptoe around me.

I just need you to be real.

And let me be real with you.

Part of that is being able to be honest about my mixed emotions without fear of being written off.

Don’t forget about us. The ones who aren’t easy fixes. Who’ll be sick for a long time – maybe forever. The ones who “look fine” on the outside, but their body is tearing itself apart on the inside. The ones where the answer isn’t so clear. The medical mysteries. The hard cases.

When we tell you about the severity of our pain, you can help us.

And it only takes three words:

“I believe you.”

Yes, it’s really that simple.

Unsplash photo by Luis Galvez

Originally published: September 15, 2018
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