Tuesday, November 19, 2019

Queer Eye for the Fibro Girl*


What makes me special enough to be on Queer Eye?

I’ve spent many recent day and nighttime hours distracting myself from pain by watching Queer Eye: More Than a Makeover. For those of you who haven’t seen it, it’s quite different than the old Queer Eye for the Straight Guy show. It includes women, for one thing. It is less about making a person into a pretty package to reveal at the end of the show and more about making the person feel worthy of changing their life for the better. Makeover candidates tend to be selfless in some way. Maybe they are completely dedicated to their teaching career, or their arts community, or otherwise serving others and putting their own needs on hold. Their appearance isn’t appalling in the typical pre-makeover way and appearance is only part of the focus.

Watching the show has me fantasizing about what would make me a makeover candidate. What’s my hook? What would make the audience curious about me and wanting all the best outcomes?

It took me about 60 seconds to realize with an eye roll that my hook is fucking fibro. My life isn’t extraordinary. I don’t spend 16 hours a day trying to end homelessness or show underprivileged youths that they have value. I’m a stay-at-home mom to one young kid. I work from home about 10 hours a week. I’m middle-aged and have average looks. I clean up well and occasionally display a personal style.

What makes me stand out is that I’m in excruciating pain most of the time. The rest of the time I’m just in a lot of pain. I think people without fibro have trouble imagining having pain all over, other than having experienced the flu. I’d explain my pain to the Fab Five by saying it’s like having hot lava coursing through my veins. The lava pools in my hips and shoulders, with non-fibro regular person aching pain in my back and neck. When my meds aren’t controlled, the lava is everywhere and courses to my extremities, making my feet feel as if I’ve been hiking for 100 miles.

Then the questioning would begin. Have you tried exercise? Yes, I’d say ruefully, as if I haven’t answered this question dozens of times. I’ve fucking tried exercise. I’ve tried walking, yoga, physical therapy, swimming, and hiking. Right now I’m in a two-month flare and can barely walk around the block.

“What happens if you walk around the block?”

“The hot lava gets hotter and I’m barely able to take care of my daughter for several days.”

“What if you do a little bit of walking every day?”

“If I’m flaring, it will make the flare worse and I could end up in the ER. I don’t have enough pain meds to cover the pain it would cause. It wouldn’t help overall. It would make things worse and worse. If I’m not flaring, it might be ok or it might not. I’ve tried to increase my walking for the past seven years since I’ve had fibro and I can’t get beyond half a mile about three times a week. Slowly.”

Of course, the Fab Five are energetic and young and probably wouldn’t be able to conceptualize this. I wouldn’t blame them. I used to run half marathons and before that was a dancer. I thought exercise could improve everyone’s quality of life. The elderly should walk a mile a day! Everyone get off the couch and do something!

On my episode of Queer Eye, the audience would at least see that I was trying. I get out of bed for myself and for my daughter. I show my family and friends that I can show up at least half the time. I take care of my daughter. I can paste on a smile and be a decent friend. I try.

Some of the audience would get it. Who knows what percentage of people watching were in chronic pain but I’m sure it’s large. Many are undertreated. Their doctors don’t know how to address their condition and they’re victims of the opioid crisis. Not victims in that they’re addicted to opioids but that because of all the attention and legislation related to the crisis, they cannot get adequate pain treatment. Opioids could help and maybe their doctors prescribe some. But rarely enough.

I’m one of the undertreated. I don’t know how I’d tell the Fab Five without getting on my soapbox about the opioid crisis and its undertreated victims. Who wants to go on international TV and talk about how they’re taking a controlled substance that some people would steal for? That my peers, those who don’t get it and those who kinda do, would judge me for? “She’s taking opioids while she takes care of her daughter!” “How is she still driving?” “She must be addicted.” “She must not be trying hard enough.” “Has she even tried yoga?”

I’m not that brave. I do talk about my struggles with my friends and trust them with my story. I’d be humiliated if everyone in my life knew. If I were on TV in a tell-all, I’d get scathing emails and Twitter posts about what a shitty mother and human being I was. Let’s face it, the world is harsh. And there’s that side story that says that opioids aren’t supposed to be helpful for fibro, anyway.

So the Fab Five would get an edited version of my story. Yes, I take medication for fibro (Lyrica—it’s approved and not a narcotic! I’m not a bad person!). Yes, I’ve tried acupuncture and meditation and yoga. The audience would shake their heads and feel sorry for me. And perhaps wonder if my child would be better off with her grandparents.

I’d get a makeover. The Fab Five would give my house, where I spend 99% of my time, a facelift and I’d get a new haircut and wardrobe.

Karamo would talk to me about how I really am worthy. I’m a contributing member of society. I’m a worthwhile person because I exist. Even though I’m grumpy, and somewhat depressed, and unable to give back to others.

I guess what I’m getting at is that I don’t know my worth. I know my daughter and family need me, pain and all. I know my friends would miss me if I weren’t here. But how am I really making the world a better place? I’m not conquering hearts and minds one blog post at a time. I’m not rallying lawmakers for legal marijuana and fewer restrictions on opioid prescribing. I’m a progressive Democrat who’s not helping candidates win elections other than by casting my own ballot.

On my Queer Eye show, I’d have my breakthroughs and tearful moments. It would look like the group changed me and that I was able to turn over a new leaf. Maybe I would.

Spoiler alert: I’m not going on the show. But it has me thinking about self-worth. How do you know your worth? Really know that you’re worthy? Worthy of love and not just a crotchety immobile lump on the couch? I try but I’m not there. When everything I have goes into being a decent mother and wife and “decent” is questionable, what is left to give?

*"Girl" because it sounds catchier than "Middle-Aged Woman" 

No comments:

Post a Comment

The Worst of the Worst

I’m at the bottom. I told myself I’d been flaring for two months. That my meds weren’t adequate, not that they ever are. But it go...