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The Emotionally Draining 'Almost Diagnosis'

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“I’m not saying it’s fibromyalgia, but…”

I remember those words distinctly from the last appointment with my rheumatologist. I don’t recall exactly what followed, but I know she wasn’t giving me a concrete diagnosis. She implied it was possible I have fibromyalgia, but she couldn’t say so with certainty. Not yet anyway.

I understand why my rheumatologist didn’t want to give me a diagnosis. She wanted to take a look at some blood tests and X-rays I got done at my primary care clinic first, even though I discussed my test results with my primary care doctor and she said everything was fine. Nothing wrong with my thyroid, nothing wrong with my joints, no physical signs of a problem. Still, there could be some very subtle indicators of an autoimmune disease or something else that may explain my chronic pain that a general practitioner could miss, the rheumatologist explained.

I appreciate that my rheumatologist didn’t want to immediately jump to conclusions as some doctors may. But I couldn’t help but feel frustrated.

If you are or have been on a diagnosis journey, you know how getting negative test results can feel more like bad news than good news. You take a step forward by getting tests that may identify the cause of your symptoms, but it feels like two steps back when the tests don’t bring you any closer to a diagnosis.

I’m very grateful to have doctors who are compassionate and listen to my concerns. I’ve interacted with some medical professionals who were less than pleasant, which is bound to happen when you have to see so many specialists in search of a diagnosis. But even with supportive doctors, being undiagnosed is emotionally draining.

Not only do you have to contend with physical and/or emotional symptoms resulting from your mystery illness(es), you have to deal with a slew of other emotions. Anxiety as you wait for test results. Frustration when you’re told your results are normal. Stress when you have to pay hundreds of dollars in medical bills that didn’t tell you anything new. Sadness as things that used to be easy are now difficult or even impossible because of changes in your body. Hopelessness as you wonder if you ever will find a word or phrase to describe what you experience.

I feel so close and yet so far from finally being diagnosed. I don’t know if any future tests or appointments will bring me closer to a diagnosis or make me go back to square one.

As tired as I am of all of this, I know the only way I can possibly get any answers is to continue to be my own advocate. And so I do.

Getty photo by Damir Khabirov

Originally published: August 4, 2018
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