“It’s a result of your chronic condition” and other experiences people with chronic illnesses experience trying to get medical care

Some doctors are amazing and I am forever thankful to the lifesaving care that I have received. But doctors are also overworked. Or aren’t natural diagnosticians. And if you have a chronic condition, it is way too easy to go to a nurse or doctor for a problem and have them diagnose it as referred pain or some other effect of your condition, like stress on the joints.

Translation for these kinds of answers? They don’t have a clue what is wrong with you nor do they have the time to even start thinking about what it could be. It is so much easier and simpler to say it’s related to your chronic condition and to tell you take Advil.

This is dangerous and upsetting for multiple reasons. In the bad old pre-Obamacare days, we had to worry about the hell that was pre-existing conditions. Luckily this isn’t a problem anymore (fingers crossed for the future! Hello, Congress!), but it’s preventing so many of us from getting care.

You can have other illnesses. You can have multiple illnesses. I have migraines, OCD, and anxiety in addition to my spinal condition.

On my study abroad in New Zealand, I started to have terrible side pains. My best friend was worried I had appendicitis so she dragged me to the clinic at the university to get checked out. After filling in a bunch of forms about my school insurance and my medical history, a nurse called me in to a patient room. I laid down on the examining table and she poked at my side.

“Does it hurt here?”

“Yes,” I winced.

“That’s not your appendix. It’s probably referred pain from you back. Your back surgery must have led to a nerve pain that makes your side hurt” she decided after a two minute exam. I freaked out and leapt up saying, “thank you. That’s great, I’ll just get dressed and get going then,” because I didn’t want her to officially document the visit as related to my back. I had a gap in my insurance and I was afraid I would be denied coverage for the visit.

I was already on student loans to fill in the gap from my work-study job and grocery shopping for food instead of buying prepared food at restaurants to make sure I didn’t go over my budget. I didn’t want to think of what an uncovered visit could cost me.

Seven years later and I still have no idea what causes this intermittent pain. Ultrasounds have ruled out organ issues and the latest orthopedic specialist dismissed referred pain as a cause, after a series of x-rays and an expensive visit.

However, I do have a better idea what’s causing my knee pain and weakness—at its worst I can’t climb stairs without my knee buckling under me. For years, multiple orthopedic specialists told me it was stress on the joint because of my back. It was the price I had to pay for being alive with a functioning spine. Multiple physical therapists and several primary doctors all said the same thing.

Then on a referral, I went to a chiropractor for the first time in years. I told him about my pain and weakness. He was skeptical that there was nothing to help my knee. He looked at it, worked on it and tried a few exercises.

He then told me that he thought that the side of my knees and my thighs were weak which was destabilizing my knee. “Weak muscles are good. Weak muscles can be strengthened. We just have to find the right way to do it for your physiology.”

He’s applied this principle to treating my body as a whole, which has not only physically improved my muscles and reduced my pain, but inspired me. Instead of feeling stuck or doomed, I believe that I can improve my physical condition. I have power over how I feel. I don’t have to accept that every ache and soreness is irreversible or untreatable. Some may be, but others aren’t, and now I have hope and power over how I feel.

To the doctors and nurses who don’t say to me “it’s just your back,” thank you for listening to me and treating me as more than just my back.

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