The Importance of Doing Your Own Research on Your Condition


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 sick but not “sick enough?”

You go to doctor 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 and 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 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 money and your insurance doesn’t want to pay for all the tests  –  only the ones they think are “medically necessary.”

“Your tests came back. Everything looks fine. You just have fibromyalgia,” they said.

Do you know what fibromyalgia is?

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

Am I right?

Then you have 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 left in this cold, white room.

“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 OK.

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

Now, I do my own research.

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 affects pain, what “psychosomatic” means, what “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 make-up to buy, what kind of restaurant you’re going to, what book to read next. Instead of spending all of that time scrolling endlessly through Instagram, how about learning about the body 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 (because I have a MTHFR mutation) 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 for your health and never, ever stop learning.

Here are my top 10 tips for learning 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 kinds of supplements might help or exacerbate your condition.

3. Join a Facebook group for your condition. Don’t read the sad posts.

4. Learn about the root cause of your condition.

5. Read about mindfulness.

6. Meditate.

7. See a therapist to talk about living with a chronic condition.

8. Got a job? Learn about workplace accommodations for disabilities 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.

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

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via  moodboard.

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