This diagnosis anniversary, I’m learning not to blame myself
It took decades to address the guilt I've carried over my hypopara diagnosis
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Yesterday marked the 23rd anniversary of my hypoparathyroidism diagnosis, and the first time I’ve finally accepted that my condition is not my fault.
Logically, 41-year-old Heather knows that 18-year-old Heather isn’t responsible for this disease. It was a combination of tumors on my parathyroid glands, a birth defect that left me with only three glands instead of four, and a surgical team that had planned to leave me with one-and-a-half glands, but only left half of one.
It wasn’t until I restarted eye movement desensitization and reprocessing therapy (EMDR) earlier this year that I got a glimpse of the blame I was carrying about my diagnosis. My therapist and I are exploring parts work therapy, which my writer brain loves. While this can look different for everyone, for me, I identify different subpersonalities of my brain (like grief and creativity) and discover how they all work, or don’t work, together.
Parts work sometimes feels like watching a fantasy movie. I picture my anxiety part as a dark gray blob with big eyes, and my hopelessness part as just a shadow whose arm is often linked with grief. My creative part likes to wear a lot of tweed, plays an upright piano in the corner, and starts sing-alongs when I need to calm down. All of my parts look toward my protector part, who often shows up wearing a suit of armor and a blond mohawk.
Internalizing self-forgiveness
During each therapy session, we spend time with these parts and listen to what they’re saying or feeling. A big benefit of this therapy is that I don’t have to know the exact details of what happened that caused a part’s reaction. That’s a good thing because my brain fog, from hypopara and years of severe anxiety, is pervasive. Instead of recounting dates and times, we move forward with curiosity.
What is this part feeling? Where do I feel it in my body? What is it trying to tell me?
It was this curiosity that led me to understand how much guilt I was carrying over my hypopara diagnosis. While I’d previously spent a lot of time in EMDR, working through my anger toward my surgical team and support system, I never quite got through the anger toward myself.
Questions constantly circled my brain: Why didn’t I ask them to do more imaging to find that fourth gland before surgery? Why didn’t I ask, “What will we do if I only have three glands?” Why didn’t I get a third and fourth and fifth opinion from different surgeons? Why didn’t I wait to have surgery until technology was more advanced? Would any of this have made a difference?
And then I remember that I was barely 18 years old. I was a teenager, just scraping by her first semester in college. I was relying on the people around me to have all the knowledge I didn’t, and I hadn’t yet figured out how to do that kind of research myself. Even as an adult, I spend a fair amount of time working through complicated communication with practitioners, despite my substantial knowledge of living with this disease for over two decades.
Eighteen-year-old Heather had no way of knowing. Sure, if I could go back in time with all the knowledge I have now, my life would be different. But, sadly, time travel isn’t possible.
In learning not to blame myself, I’ve also had to confront my belief that if I try hard enough, I can control any outcome. While that laser-focused determination helps when I’m on a book deadline, it can be devastating and anxiety-producing when applied to uncontrollable things, like my rare disease. Sometimes the universe won’t cave to my willpower, and it’s my job to accept the results.
This hypopara anniversary, I’m internalizing self-forgiveness. Continuing to blame myself while wishing something went different in the past is only harming my future. This is the card the universe has dealt for me, and it’s my job to carry the burden of it.
In acceptance, there is freedom. And in freedom — when there’s less monstrous and heavy guilt occupying my brain — there’s more room for creativity and love. I hope as I move through my 24th year with hypopara, it is with more compassion for myself and my journey.
Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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