I Believed

Man. We have had a long, hard row to hoe with the teen. If you go back far enough into the archives, you'll see where she starts to have problems. I've always tried to be careful to protect her privacy while also documenting the shape and flow of our experience. But it blows my mind that it's all been mentioned here, from start to finish.

It would have been so easy to fail her. To dismiss her. To deny her symptoms.

But.

I'd been there, done that as a kid. 

At twelve I had problems breathing. I knew it was asthma. Apparently, that was an offensive thing to admit to knowing so a lot of doctors spent a lot of time blowing me off. Even today, it's weirdly difficult to get care.

My parents would ask the doctors, in front of me mind you, if I "just needed a psychiatrist."

My family called me a hypochondriac. My family culture was very much one where you weren't allowed to be sick, and if you were, you were faking it. They particularly did that to women. They'd grab the medicine bottles and make fun of you and everyone would laugh. 

By the time I was sixteen, I made and drove to all my doctor appointments. By myself. Often while in respiratory distress. 

When I had an asthma attack in gym class, the kids laughed at me, the teacher laughed at me and then gave me a zero for the day's workout, and then the nurse wouldn't give me my inhaler. It was so egregious and I somehow conveyed my horror so eloquently that my doctor immediately gave me a doctor's note excusing me from gym for the rest of high school.

My own pediatrician, when I had an intractable asthma episode that wouldn't resolve, asked me if had "boy trouble." Jesus. No. I want to fucking breathe. I'm upset I can't breathe and I've been fighting for weeks now. I'm exhausted. When do you think I have time or energy to give a shit about boys? They eventually admitted me to the hospital for round the clock nebs.

When we traveled overseas and I invariably reacted poorly to the complete lack of any air quality standards whatsoever, not only was I denied medical care, I was denied any care at all. I had to drag my sorry wheezing ass for miles to go to third world pharmacies for what few meds they had. Alone. At one point, I begged my parents to please just send me home so I could go to the doctor. Nope. 

So when my kid got older and better able to articulate what was wrong in her body, I knew I wasn't gong to do any of that to her.

But I was surprised at how difficult it was, how deep the conditioning went. I did wonder if she had a psych issue. I did wonder if maybe she was malingering. Or not taking her meds correctly. I was horrified that I thought that. I think it shows how deep the deny, dismiss, delay, deflect culture goes. We are taught to minimize illness to the point of denial. All of us. 

Thankfully, her body threw a lot of concrete signals. Fever. Test results. Other non stop malfunctions in very tangible ways. The fact that, for some of it, she'd been like this as a toddler, when she was too young to fake it. That the school system had put her in Early Intervention due to her motor deficits (which in my state you do not just get services, they are very stingy about it, they work very hard to disqualify you). Like, it wasn't just me saying it. It was just none of it made sense. None of it explained everything.

But focusing on the objective tangibles helped me stand strong, but I still didn't understand what was wrong. It was frustrating. And she was a teen so there were times when she acted her age. Where it would have been very easy to write her off as being dramatic.

But ultimately, I decided I had to believe her, and if she said she didn't feel good, then I had a duty to make the doctor appointments. I wanted her to at least feel like her parents were there for her, no matter what the diagnosis was. Even if it was nothing at all. I wanted her to know she could trust us.

We spent a long time making no progress. She was dismissed a lot. Growing pains. Anxiety. This just happens sometimes. It's normal. Why are you here?

We started this latest round of trying to figure out her issues in 2019. Almost four years of no progress at all. It was hard to not wonder if it really was nothing. 

But I decided to believe her. We didn't give up. And now we finally know a lot of why she's having the problems she's having. There's no cure, there's very little treatment, there is a lot of misery with the symptoms, and we really need genetics to show up now and determine if there's a syndrome beyond this diagnosis, but we have a name. A name causing the worst of the symptoms. 

Knowing your demon's name is half the battle. When science has the fix, she'll be able to access it. That's the other half of the battle. 

She won't be left to wonder whether maybe she really is just anxious. Doctors won't be able to dismiss her. They'll have to listen to her, and if they don't, she'll never have to worry that maybe they're right. She'll know they're dumbasses and thank you, next. She'll have a certainty and a direction that will let her see through the bullshit. It's not enough, but it's a solid assist.

I believed her, but I still can't quite believe we finally figured it out. It doesn't feel real still.