I looked back at some old posts today and realized we’ve reached the one year anniversary of shaving my head to hide the bald spots. The one-year anniversary of my improperly administered glucose tolerance test. The one year anniversary of my getting on metformin for exactly five days, and the disastrous side effects. That means it’s about thirteen months since my diagnosis.
I have had the symptoms of inflammatory poly-cystic ovary syndrome since I was eleven.
I didn’t get a diagnosis until I was just over thirty- six.
For twenty-five years I didn’t have answers– or rather, I had a myriad of answers that didn’t add up. The catastrophic weight gain was because I was not taking good care of myself. The crippling anxiety and depression were because I was a drama queen exaggerating things for attention. The fatigue and referred pain must be chronic fatigue syndrome and fibromyalgia, because nothing shows up on a blood test. The irregular cycles and infertility were because I was fat and needed to take good care of myself. The fact that I gained weigh if I dieted or exercised were because I was in denial about whether I was dieting or exercising. The fatty liver and elevated cholesterol were because I was cheating on my diet and “snacking” too much, and when I showed them my food journal they didn’t believe me.
Meanwhile, the religious set alternately blamed me for not trying hard enough or for showing off my symptoms to make a scene– or else they blamed God. They claimed my suffering was a special gift from Jesus and Mary so I could offer it up as a suffering servant. The emotional and spiritual damage from those lies have been worse than the trauma of doctors not believing me. I still can’t talk to the Virgin Mary some days.
And one day, in December of 2020, I mentioned my irregular cycles in passing to a doctor who was testing me for something else.
The doctor was shocked. He said such things were not supposed to happen. He looked at my bald spots and my hairy face. He ordered some tests.
And I had a diagnosis.
And with a diagnosis came a treatment plan. There’s no cure for PCOS, you just treat symptoms. Some women with PCOS have symptoms out of control and nothing helps. But in my case, knowing the cause of symptoms was everything. I got medication. I researched and asked other people with PCOS, and got supplements known to help. I got a new eating plan designed for the PCOS sensitivity to carbohydrates. I’ve been in treatment for a year.
The double wallop of anxiety and depression are still a problem. We’re still working out what to do about them.
The bald spots never quite grew back, though what’s left of my hair is healthier. I’m going to get a short punk haircut the next time we have money for the beauty shop. I’ll keep wearing my eccentric scarves and beanies. It’s not a perfect arrangement, but at least I know the cause.
The fatigue and the head fog are all but gone. I’ve had a year of normal energy levels, which led to being able to exercise, which led to building muscle as I haven’t been able to do since undergraduate. I don’t have to take “fatigue days” where I can’t get out of bed for a week out of the month. I can drive where I want to without worrying about dizzy spells. I can plan activities and usually show up when I meant to. I can’t even describe how different that feels.
The weight went down immensely. I shrunk out of all my clothes, bought new clothes at the thrift store, and have now nearly shrunk out of those as well. I’ve got the loose skin on my arms. I had to re-learn how to put on makeup for a face that’s a heart instead of a circle. I will always be plump. That’s not a character flaw, it’s just a trait. But the fat that was a symptom of my illness keeps coming off. After being completely unable to lose more than a few pounds that come back with interest for two decades, I can’t describe how strange that is.
The cycles of the month are coming regular instead of every six or ten or fourteen weeks. There is still referred pain, but not nearly as much. The doctor thinks I’m ovulating again. There’s just the ghost of a chance that I might get that late-in-life rainbow baby I’ve been longing for since Rosie was a toddler. Maybe.
I am a professional writer. My whole job is to put things into words. But I don’t have a word for this: living a year with the realization that my whole life could have been different if someone had believed me sooner. Realizing that all that devastation and suffering was avoidable, if only things had gone another way. Wondering if, if I was just a little more clever or articulate, I could have blurted out just the right thing to just the right doctor not at age thirty-six when I did, but at age twenty-six or at age sixteen, and if life could have been something other than it was. Yes, I still blame myself. I’ve had decades of practice in thinking this is all my fault. It’s a difficult habit to break.
Mostly I’m just taking it all in, wondering if it will ever feel normal.
Please understand that many if not most chronically ill people aren’t as lucky as I am. Most of us go through the hell of not being believed, of being blamed for everything, of being told it’s God’s will, but many don’t have a moment of epiphany and a really effective treatment. They go on and on like this.
Please don’t judge people who are suffering something you can’t understand. Please believe them and show compassion.
And we’ll see where we go from here.
Image via Pixabay
Mary Pezzulo is the author of Meditations on the Way of the Cross and Stumbling into Grace: How We Meet God in Tiny Works of Mercy.
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