The 5-Step List I Use Along My Diagnosis Journey

Meara O'Space
woman writing in a notebook at a table with a cup of coffee
woman writing in a notebook at a table with a cup of coffee

Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?

That’s because the journey to a diagnosis is a long, hard one. If you’re reading this, I’m guessing you’ve been on WebMD at some point self-diagnosing yourself. You may have even come across fibromyalgia by this point, and you might want  to ask your doctor to test you for that. Fibromyalgia is a diagnosis of exclusions, and this is a somewhat controversial statement depending on where you live. In my opinion, it’s basically what you end up with after about a year of tests. But there is a way to try and streamline your diagnosis journey.

Related:Download The Mighty app to connect in real time with people who can relate to what you're going through.

For example, I have a severe form of fibromyalgia. It developed over a series of three years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde, pretty 20-something with a mental health record’s complaints as valid as back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.

1. Know how to recognize and describe your pain.

I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my boo-boos. Even when I developed endometriosis at age 14, I thought I was just sick to my stomach, light-headed, and bleeding a lot. I could describe what was going on poetically: “Something is clamping on me,” or “This burns.” I never thought of it as pain, because I was taught to ignore, belittle and never admit pain from a young age. If you can, describe what you feel in metaphors; try and think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” If you can pass the metaphor, movie, or “this hurts” test, you can answer “yes” when the doctor asks you if you are in pain.

Related:The Pain of Perfection When You Live With a Chronic Illness

2. Keep a log of symptoms.

Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.

3. Track how you feel when you exercise.

Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.

4. Be mindful of what you’re eating.

Log what you eat and when you eat in your symptom journal. Your symptom journal should ideally be written chronologically.

Related:I Was a 'Near-Perfect' Housewife. Then I Was Diagnosed With Fibromyalgia

5. Pay attention to your clothing.

In your journal, record what clothes you are wearing and when. Make sure you write down the type of fabric as well. This can be found on the tags inside your clothes. Keeping track of this can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers two, three and four are good things to do post-diagnosis as well.

This five-step list is great for any diagnosis journey, no matter what the diagnosis may be.

Remember, most diagnoses take quite some time, so be patient and kind to yourself along the way.

Read more stories like this on The Mighty:

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Why I Can't Just 'Unplug' as Someone With a Chronic Illness

When Your Spouse Has Fibromyalgia and Chronic Pain

8 Things to Make Traveling With Fibromyalgia Easier