Even Though Doctors Can't 'See' My Pain, Does Not Mean It Doesn't Exist

If you look at me, even if you really look hard, you would not be able to “see” my chronic illness — chronic illnesses, actually. It isn’t until I partially dislocate my shoulder while pointing to something, or my hip while walking, that people can see I do have a disability.

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Even then, others might see it as something interesting, like purposefully crossing your eyes. They see your painfully dislocating joint as a “trick” instead of a serious medical illness. And to be honest, I can’t blame them.

Others, including doctors, can’t see my pain. That’s the whole “invisible” part of an invisible illness. Whether you see me on the street or you work with me every day, you can’t see my pain.

When you can’t see something, it’s easy to think it’s not there. It’s like the saying, “If a tree falls in the forest and nobody is around, did it make a sound?”

Doctors believe in science. They believe in something that can often be seen with the naked eye; they believe in cause and effect. My pain cannot be seen on an MRI and it certainly can’t be seen with the naked eye. There is no clear cause for my pain.

So the question is, “If you don’t see my pain, or anything causing my pain, is the pain really there?”

The answer, unfortunately, is usually a “no.”

I have bounced from doctor to doctor like a pinball, done test after test, and have been told roughly the same answer from every doctor: “There is nothing wrong with you.” In fact, every doctor had a way of putting it differently.

“I’m sorry but the tests are telling me there is absolutely no reason for the pain you’re describing.”
“Your X-rays and MRI are clear. There’s no tear or break.”
“Has school been stressful lately?”
“I think the best thing for you is to speak to someone about how you have been feeling.”
“Did you recently break up with a boyfriend?”
“Stress causes pain. You just need to relax.”
“It’s in your head.”
“You’re doing this for attention.”

The most hurtful answer I’ve ever gotten from a doctor, a few doctors actually, is the “Your anxiety disorder is causing it. There’s nothing wrong with you.”

I have been told this on more than one occasion, and every time it took only a minute or two after looking at my chart to “figure out” what was wrong with me. Oftentimes a doctor sees your medical history of depression or anxiety, and that is automatically the answer you get. It couldn’t possibly be anything else. They don’t take the time to talk to you, to ask what brought you into the office to begin with. You don’t get a chance to ask them for help and you begin to question whether or not it is all in your head after all.

The perception is that if the doctor doesn’t see anything causing you pain, then your pain does not exist. Those with chronic and rare illnesses know this is almost never the case.

Here’s a gentle reminder: our pain is real, even if you can’t see it.