Thoughts on children in pain from a former child in pain

My sense of memory is freakishly above average. I can rattle off my debit card number, driver’s license number, and my patient number at the University of Iowa Hospitals and Clinics. Don’t get me started on phone numbers or birth dates.

My autobiographical memory, which is especially nuts, contains vivid details about this day 31 years ago: Dec. 10, 1992, a Thursday. I remember who in my 3rd grade class had a birthday that day, the fancy store-bought cupcakes they served the class, and how each cupcake was topped with a scandalous heap of the most sickeningly sugary frosting ever made. And I remember thinking later that evening that eating that whole mound of sugar was the reason I was feeling funny pains in my chest.

That was my first symptom of childhood autoimmune arthritis: chest pain. It’s why I remember so much from that very day. It was the day I got sick — the day my normal childhood evaporated and I became a disabled kid, never again to be a medically healthy person. From there, my condition rapidly deteriorated as inflammation swept through my body. Eventually I was hospitalized and placed in intensive care. After several miserable weeks, I was officially diagnosed with systemic onset juvenile rheumatoid arthritis.

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I think about the onset of my illness every year on this date. But over the last few years, I’ve thought much more frequently about what I endured as a child and a young adult. Why? Because lots of kids today are going through stuff, too. The medicalization of kids — in particular, kids with gender identity issues — has skyrocketed. “Gender-affirming” treatments such as powerful hormones and surgery have become increasingly common against a backdrop of political ire and alarm over ethical implications of such severe methods being practiced on children.

I’ve already opined that hormone-altering medications and invasive plastic surgeries make for horrific methods of treating gender identity disorders in kids. It isn’t simply the obligatory position of a token conservative journalist. Those treatments don’t just conflict with my moral code or worldview. I question and criticize them because the issue — one of the most consequential of our time — evokes my own lived experiences.

No, they’re not the same. My affliction was — and is — a physical one, not a psychiatric one. Yet there are similarities:

I was a kid in pain. I was in desperate need of medical care. My terrified parents were told to prepare for life-threatening possibilities.

I received powerful hormones prior to puberty. I was depressed and anxious. I looked and felt different from my peers.

And I underwent many painful surgical operations.

I shouldn’t remember that horrible first night in the PICU, but I do: My fever was so dangerously high that the nurses stripped me down to my underwear while I lay in the bed, uncovered and shivering. The inflammation was acute and everywhere, but that’s systemic onset: it attacks not just the joints, as one typically understands about arthritis, but the whole body, organs and all. It was a cardiologist brought in to treat pericarditis, an inflammation of the lining of my heart, who eventually diagnosed me with JRA.

I also shouldn’t remember the pericardiocentesis — the procedure to drain the fluid that had built up around my heart — but at this point in the story, it’s probably little surprise that I do remember that big needle going into my chest. It actually wasn’t that bad. I was awake, but sedated enough to keep my eyes closed. I let out one whimper as the needle was inserted, then chatted with the medical staff through the rest.

I was discharged from the hospital after three weeks, the inflammation finally under control thanks to the magical poison known as prednisone. Prednisone is a corticosteroid — a synthetic hormone that goofs with the adrenal gland and its production of the hormone cortisol.

On paper, the side effects of Prednisone — mood changes, weight gain, increased hunger and a rounding of the face, to name just a few — don’t do justice to the experience. My very high daily dose made me ravenously hungry. One morning I ate seven biscuits with sausage gravy in a single meal. My face swelled tremendously; an effect called “moon face” that affected my self-esteem. Mood swings meant that I cried at both everything and nothing. One night while in my grandmother’s care, I burst into tears and she came to give me a hug. While I sobbed, I vividly recall thinking, I have no idea why I’m crying.

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The crying stopped after I was able to wean off the prednisone. Other effects stuck around. Puberty started relatively late — the first time I wasn’t ahead of the curve in developmental milestones. There’s some agreement that prednisone can delay puberty. It’s also known to stunt linear growth in children. Today, my height is five to seven inches lower than what was projected throughout my first eight years of life.

Four years ago, I mused to a friend about my “moon face” and Googled it on my phone to show him an example. He looked at the screen, then looked up at me and said, “Oh! Yeah, I can see it.” Rapid weight loss has slimmed my face dramatically, but these cheeks will always be a bit puffy.

Coupled with raging arthritic activity, puberty was rough. The most promising medications were not enough to slow the destruction of my joints, so my family and I chose the significant step of surgical joint replacement. I wasn’t mature enough to consent to the first one — my right hip, four days after my sixteenth birthday. I let my mother make the decision. After it healed and I tasted the sweet freedom of pain relief, I eagerly sought more joint replacements.

But nothing can temper euphoria like reality. I was confronted with the true risks that accompany major surgery at the age of 23 in the form a lump growing on the back of my underarm, paired with a head-to-toe feeling of “ickiness.” A bacterial infection had made its way into my bloodstream and lodged onto the prosthesis in my left shoulder — my seventh of what was eight joint replacements at the time. It took 12 days in the hospital, three surgeries, and six weeks of nuclear-strength antibiotics to resolve. Infections are scary.

The common link between my experiences and those of a gender-questioning kid seeking medicalized treatment are that they both involve hormone-altering medications and painful, irreversible surgeries. That’s where the similarities end. The drugs and surgeries are different. The reasons are different. In my case, they were utilized to heal — or at least treat — a verifiably diseased body. In the case of gender transition, they are utilized on healthy bodies with the intent of inducing a cosmetic effect to match what the mind believes, and the soul craves.

Given the substantial side effects and the number of relative unknowns in the field of pediatric gender transition, it defies credulity how readily and easily some kids are started on medicalized gender care. My experience as a child tells me that hasty intervention could be disastrous in the long term.

Here’s what that experience has also taught me:

Despite assertions to the contrary by gender-affirming care providers, no medication with long-term side effects is truly reversible. That includes puberty blockers.

Elective surgery is a huge decision with lifelong implications. Many teenagers are not mature enough to make that on their own.

Kids — especially ones dealing with abnormal issues — need boundaries.

Kids are more resilient than many adults realize.

There is no such thing as being born in the wrong body. Take that from both the kid and the adult who have inhabited a very, very inhospitable one.

I’m not saying that kids struggling with gender identity shouldn’t fight for their mental health. Quite to the contrary — they should fight like hell. But don’t let them destroy their bodies and their psyches in the process. And don’t place adult decisions at the feet of children.

I would certainly have a lot of adult wisdom to impart if I were able to travel through time back to Dec. 10, 1992 and talk to that little 3rd-grader with chest pain. But telling her that it’s about to get super tough will only scare her. Telling her about the medicine and surgery will terrify her. Telling her that this will instill a tenacity and humility that serves her well in life will only confuse her. She’s eight, after all.

Instead, I’d say just one thing to that bewildered kid: You’re going to be just fine.

Comments: 319-398-8266; althea.cole@thegazette.com