After Careful Consideration…

46 years of research, exploration, and experience qualify me as my own best expert in fibromyalgia. Having to educate your primary physician in symptomotology (if they’re willing) is not unusual among fibro patients. Counseling is highly recommended and it’s been invaluable for me. One piece of advice I’ve heard and read about is the importance of acceptance.

The word doesn’t resonate with me regarding chronic illness and pain, like it bounces around in my head pinging off the walls of my brain like a game of Pong. (If you know, you know.) I’ve grappled with it through a few counselors and read about other’s ways of accepting their particular problems. What does it mean to accept fibro? What would that look and feel like?

Yes, I “know”all about fibro and “accept” the diagnosis, been living it for decades now. But I think “acceptance” means something more, like saying, “Yep, it’s okay that I have fibromyalgia and I’ll plan around it as necessary.” That’s how I lived my life undiagnosed for the first three decades. Hadn’t really been a question I’d dealt with until my symptoms became so many and my flare ups too bad to complete a lot of daily tasks. My best understanding of fibro is that the “flight, fright, or freeze” gets kicked into overdrive by a trauma or serious injury/illness and the system doesn’t turn it off when a sense of safety returns. The flood of adrenaline, as a result of the dysfunction, affects every system of the body and, over time, it’s cumulative.

For about a decade after hitting the wall, I searched for and tried many “remedies” in an effort to halt and maybe even reverse fibro, in direct opposition to acceptance. I continue to try new things to ease, rather than eradicate, my symptoms after skeptically opting to give attention and energy to a particular concept or action. Still, “acceptance” escapes me. Ideally, I can cruise along for several days without giving fibro much thought, but there’s invariably a dip in the road. If I’m lucky, it’s just a little bump into the air, but when I veer out of lane, hit the shoulder of the road, or have a rollover, I say, “Fuck fibro,” or “I’m so fucking sick of fibro.” I might consider my quality of life, now able to do activities outside home very infrequently. Hell, I don’t even drive anymore because serious cognitive impairments, including reaction time and processing a lot of visual information (think busy intersection) interfered with my ability to safely operate a vehicle.

In the face of flaring symptoms, I know I should say, “Oh well, this is fibro and this too shall pass.” I imagine that’s what acceptance would say, and I do try to adopt that attitude when my starting point is strong or even just stable. When I begin from a place of difficult pain, it’s just not possible to muster that perspective. I do not accept fibro. I hate fibro – reject, resist, denial, rebuff. My tears protest the chronicity of this pain-in-the-ass illness.

A review of my own experiences and many, many research papers brought me to the recognition that I am my own best expert and I choose to challenge the notion that acceptance, my version anyway, is important or vital. A person can live without accepting a life of fibro. It happens anyway. I refuse to think of disappointment or anger at the cards as dealt as “bad” or “wrong.” Do others have it worse? Emphatically YES and I have empathy for them in their struggles. At the same time, I can be pissed at my limitations and pain.

Tonight, there is a neighborhood Christmas party that starts at 7:00 and my husband is attending one at the home of one of our friends. I cried in frustration this afternoon because I wish, I wish, I wish I could attend. Unfortunately, by 4:00 pm my tank is empty. I can’t remember the last evening event I attended. Every trip in the car, no matter the time of day, involves pain and sometimes nausea or vertigo. Staying vertical at a get-together while engaging in conversation takes an enormous amount of energy, following which it takes at least a day or two after for recovery to baseline. The more I put into an appointment, going to a restaurant, or a trip, the longer it will take to return to “normal.” I accept that but others’ express that I “just come on. It’ll be ok.” I appreciate their inviting friendship but explaining it repeatedly takes its own toll.

In my expert opinion, it’s not wrong to join the throngs of people in the movie “Network” and call out, “I’m mad as hell and I’m not going to take this anymore.” For me, it feels powerful. Yeah, I get that it won’t change anything, but nothing else has.