Whew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to tap my Tumor! sign and leave it at that. There’s something else I want to write about now: my chronic illness and my fibromyalgia misdiagnosis.

Did you know that May is Brain Tumor Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of chronic illnesses, but these two things in particular have been just about my entire life since October 2014, so they are getting top billing on my blog on this lovely May Day.)

Fibromyalgia: Misdiagnosis?

I mentioned in a previous blog post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this chronic pain path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blogβ€”where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

Article: Ultimate Guide to Helping a Loved One with Brain Cancer

I have no qualms about oversharing when it comes to my well-being, in case that wasn’t already abundantly clear.

So here’s the deal. On February 2, 2017 I had fibromyalgia. Then on February 3, 2017 I officially had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my numerous doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a person without a brain tumor.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

Misdiagnosis Bottom Line: I felt the same!

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*β€”even though in that 24 hours, my list of symptoms was suddenly more than validated. I wasn’t just making stuff up or being stubborn about diet and exercise, and it the fibromyalgia misdiagnosis was total crap.

Medical professionals (not speaking of specific doctors right now, just medical pros as a whole-ass community) who were previously dismissive of my chronic pain symptoms were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time. All that changed was who believed me.

And somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF YEARS.

(I am so angry thinking about it! I might get over it one day, but not this day!)

charlie_brown_pain_scale

(My Spoonie friends are grabbing the box of tissues right now. They are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong. Could be that fibromyalgia was a misdiagnosis.

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Now that I have proof of this brain tumor (grade 2 Astrocytoma, can’t remember if I mentioned that) and I am recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?


*I implore you to think about this before you accuse someone with a fibromylagia (misdiagnosis or diagnosis) of being an attention-seeker, a pill popper, or a conjurer of fake maladies. It hurts us all, and keeps the counterproductive stigma alive.

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