I have always been fairly bouncy and youthful. I’ve also always been vain and deeply in denial about getting older. 2 years ago, my health nosedived in a way that went from sad to frustrating to terrifying. It started with sudden arthritis bad enough to stop my aerobic routine and make keyboard and mouse use agonizing. If you know me, you know that means a lot of every day was agonizing. I rationalized that I am getting older and that I’ve earned any repetitive motion injuries with 2 decades of thoughtless ergonomics. I sucked it up.
I started having a lot of stomach trouble but it was gradual enough that it never clicked into the foreground. Whatever was happening, it messed with my energy levels. It messed with my sexuality. It messed with my sleep. I had a hundred odd little complaints. I rationalized it all as me getting old. My optimism decayed, my demented confidence that women still think I’m hot went with it. It turns out that a lot depends on that delusion for me. You might as well remove my thyroid or my knees.
I love moving, I love walking. Suddenly one day there was a tightness in my chest when going up a big hill. Over the next year, it got worse and worse and worse. All the joy in my life began to shrink and dry up like a waterhole. I was imprisoned on a small island. Walking to my classrooms the chest pain would become crushing and terrifying. I wasn’t tired or out of breath, just being squeezed by something that would pop me like a bubble if I kept moving. Worst were the weird middle of the night chest pains that seemed to come from nowhere. I think they made me the loneliest I have ever been.
It’s harder to explain how I rationalized and lived with this. The minute I took this to the doctor I would be admitting my normal life was over forever and I’d be off on the horrible “older guy with heart trouble” ride I’ve watched lots of people go on. I would be transformed into a patient. I also knew that my ADHD meds would be instantly canceled and I began to consider a future where I would never again feel awake and motivated.
It was like my only remaining decision was where to crash my plane.
My ADHD (and its co-morbid buddies, anxiety, depression and brain fog) got worse. I was overwhelmed by smaller and smaller challenges. “Nope, can’t check the email. I sure hope nobody sends me anything important ever again”. And no wonder, life was filling up with fearful choices with sad outcomes. Game over, man. Suddenly everything that would simply be kind of a downer ordinarily became text from my obituary. No girlfriend? He died alone. House dirty? He died amid his clutter and unwashed dishes. Unsatisfied creatively? He failed, period.
It might impress you how fatalistic I can be, and not in a good way.
The only reason I finally flushed my ADHD meds and went to the doctor was my son. Me dropping dead would destroy him. As little as was left for me personally by sticking around, I couldn’t possibly allow this to happen if I could avoid it. Of course my doctor was horrified at my story, and of course, all the things I passionately don’t want were prescribed, planned and scheduled. I went for the cardiac stress test and my blood pressure was so high they wouldn’t do the test because it might kill me. They did still charge me $150 though.
My ADHD was then untreated and exacerbated by emotional stress. I limped through my work. I became a flake with a short temper and increasingly frequent crippling angina pain. This way, ladies.
But I kept feeling that something was being missed and one day it came to me in an instant. A couple of years before she died, my Mom told me that she had been diagnosed with hemochromatosis.
All of these “You’re just getting older” problems were symptoms caused by a mutation of a gene called HFE which is most often the cause of hereditary hemochromatosis. Hemochromatosis causes your body to absorb too much iron from the food you eat. Excess iron is stored in your organs, especially your liver, heart, and pancreas. I was being slowly poisoned to death by iron. Each symptom was a different system in my body expressing its toxicity.
The genes that cause hemochromatosis are inherited, but only a minority of people who have the genes ever develop serious problems. Signs and symptoms of hereditary hemochromatosis usually appear in midlife. Treatment includes regularly removing blood from your body. Because much of the body’s iron is contained in red blood cells, this treatment lowers iron levels. The menstrual cycle protects women with hemochromatosis until menopause, when symptoms sometimes emerge.
I’m not out of danger yet but my prognosis is good. I expect I’ll be showing real improvement soon. If there’s a medical lesson in this story it’s about assumptions on the patient’s part as much as those held by the doctor. I looked at most of these symptoms and just assigned them to the “unimportant background noise” bin when every single one of them alone and as a group was a foreground signal. I didn’t want to sound like a whiny little bitch when talking to my doctor so I didn’t say “My joints hurt and I feel foggy and I have little sores in my mouth oh and my HEART HURTS so much!”. I didn’t want to sound like Grandpa Simpson. I wanted to tell my doctor a clean, coherent story that reflected well on my ability to tell such stories. I didn’t want to sound dumb or heedless of how busy he is and that desire to impress might have killed me. Just as there aren’t really any such things as “drug side effects” but effects we don’t choose to focus on because it’s not part of the narrative, there aren’t necessarily trivial symptoms, just ones that seem that way.
Thanks, Mom, for saving my life 17 years after you lost yours. I remember how emphatic you were in explaining it to me. That’s why the memory finally resurfaced and led me to safety.