The Importance of Advocating For Yourself As A Patient

An unapologetic letter to my chronically ill friends

Dear “spoonie” friend,

We need to talk. I know you’re frustrated and feeling hopeless. I know you feel like your doctor doesn’t understand you. I know your medical bills are piled up at the corner of your desk collecting dust.

We’re taught that doctors “care” for you when you’re sick — but what happens when you’re always fucking sick but not sick enough?

You go to doctor’s appointments and tell them, “I’m in pain all the time, I’m tired for no reason, I can’t do these things I used to do, I can’t do my normal daily activities,” but they look at you perplexed when the basic metabolic panel they ran comes out “a little low, but nothing to be alarmed about.” You’ve lived in this body for how many fucking years? You KNOW something is wrong. You know it deep in your core.

But they ran “all the tests,” which isn’t actually “all the tests;” it’s just a few that the doctors’ run because otherwise it would cost tons of fucking money and your insurance doesn’t want to pay for all the tests — only the ones they think are “medically necessary.” Jane Doe in Billing at the insurance company cares a lot about your health, I’m sure.

“Your tests came back. Everything looks FINE. You just have Fibromyalgia,” they said.

Do you know what that is? Maybe you’ve heard of it from that one commercial where they say it’s “caused by overactive nerves,” or your friends’ Mom has it and lays in bed all the time, or maybe you’ve seen it joked about on one of many medical television shows like House MD.

Am I right? Then you have the nearly the same level of understanding of my chronic condition as my primary care doctor.

One day, I asked my PCP what caused Fibromyalgia. They’re my doctor, I thought, I’m sure they can explain the medical cause of this awful, chronic, debilitating pain to me. After all, we still have 11 of our 20 scheduled minutes in this cold, white room left.

“I’m not really sure. It seems like you know more than I do.”

There it was.

I finally got it.

This whole time, I’ve gone to doctors expecting them to be experts on — well, everything. But they aren’t, and that’s okay.

Then, I changed my expectations of what it means to “go to the doctor” as a chronically ill patient.

Now, I do my own goddamn research. I am no longer a victim of my condition.

I changed my view of my “condition” as a challenge that I needed to find the answer to. I needed to believe that there was life beyond the pain I was experiencing. I needed to believe that I had an identity, and that identity was not my condition.

I learned about how the human body works, how bodies process food, how the brain works, what neurotransmitters are, what causes my body to shift “out of place,” how anxiety effects pain, what “psychosomatic” means, what the fuck “meninges” are, the purpose of organs and nerves and muscles and fascia, what vitamins do, and all of the theories about what causes my condition as well as all of the symptoms, theories, supplements, medications, and treatments I can do to manage my condition.

Here’s my advice: be your own advocate.

I know you already research what kind of makeup to buy, what kind of restaurant you’re going to, what book to read next. Instead of spending all of that time scrolling endlessly on Instagram, how about learning about the body and mind you inhabit?

As you might be aware, person-already-on-the-internet, there is SO MUCH INFORMATION on the internet — both from medical professionals and medical researchers as well as personal anecdotes about diet, exercise, supplements and everything in between. We are so fortunate to be alive in this time where we can learn about our own conditions and educate ourselves. The answer to your condition might not just be one small pill.

I know that’s tough to swallow because that’s what insurance companies and commercials on TV and our doctors want us to believe, but this might not be true. Maintaining health, especially when you’re already chronically ill, isn’t just swallowing a pill — it’s a holistic, lifelong journey full of trial and error.

Here’s an example: I see an amazing Chiropractor in the Seattle area that specializes in Fibromyalgia patients. She routinely runs my blood work to check my Epstein-Barr antigen levels, because I asked her to. Today, I asked her to check my vitamin B12 and vitamin D levels, because I know a deficiency in those two areas can worsen my fatigue and many of my fibromyalgia symptoms. She agreed to run the test because I asked for it. I supplement with methylated folate and vitamin D because #seattle.

If none of that paragraph makes sense to you, then here’s my challenge for you:

Learn about your condition, learn about the human body, learn about food and diet, be your own advocate with your health, and never, ever stop learning.

My Top 10 Tips For Trying To Learn How To Manage My Chronic Illness:

1. Track your food. Try different diets. Paleo, AIP, Ketogenic, Lots-of-Veggies-and-No-Processed-Food, Vegan/Gluten-Free. Try eliminating foods. Get a food sensitivity blood test. Pay attention to how you feel.
2. Learn about what supplements and vitamins.
3. Join a Facebook group for your condition. Don’t read the sad posts.
4. Research the root cause of your condition.
5. Read about mindfulness.
6. Learn about meditating.
7. See a therapist to talk about living with a chronic condition.
8. Got a job? Learn about workplace accommodations under the ADA.
9. Reduce your stress.
10. Lastly, and most importantly — go on a walk, even if it’s just five minutes. Memorize Newton’s first law of motion: An object at rest, stays at rest. An object in motion, stays in motion.
11. It’s okay if none of this works for you or if your condition isn’t treatable or if you just don’t have the will to care or if you’ve tried everything under the sun already. At least you read this far!

I don’t need a doctor to learn or read or validate my illness. I need a doctor to trust me and work with me so that I can manage my condition well enough to be able to live my life.

*Information and statements made are for education purposes and are not intended to replace the advice of your doctor. I am not a doctor, and these are my opinions. Medium does not dispense medical advice, prescribe, or diagnose illness. The views and nutritional advice expressed on Medium are not intended to be a substitute for conventional medical service. If you have a severe medical condition or health concern, see your physician.