I’m celebrating both Pride and hypopara awareness this month
June is a chance to share stories of hope with both of my communities
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June is one of my favorite parts of the year. In addition to it being Pride Month, June started with World Hypoparathyroidism Awareness Day on the first. This month, two of the communities I advocate for come together.
My life goal is to live authentically out loud, as a lighthouse of sorts. I find that both the chronic illness and the LGBTQ+ communities have a similar problem: It’s so easy to find stories of struggle, but it’s much more difficult to locate stories of learning to manage a happy life. I think it’s important for me to share stories of hope, whether that’s through my columns, books, or on a podcast.
When asked about why I am so open about both my chronic illness and my queerness, I come back to the same answer: 48% of the LGBTQ+ community is disabled, and I am one of the people at that intersection. I have the opportunity to share that life can be more than a struggle, especially to a younger generation.
Advocacy while chronically ill can be a lonely job, even with a strong community of both in-person and online friends. While I’m very lucky to have my Bionews family and a handful of friends who read every column and book I write, I often forget that there are people I might be influencing whose names I don’t know and whose journeys I’ll never hear about.
Despite questioning the true impact of my efforts, I am still committed to doing the work. Recently, the Hypoparathyroidism Association asked me to join them on their podcast, Hypopara Unscripted, to share my journey to diagnosis and how I turned years of research into advocacy. The podcast is available on most streaming platforms.
I’m aware that, as a white, cisgender woman in a queer relationship with a cisgender man, in a dual-income household, I have a lot of privilege. I have access to good medical care and can afford to work part time while navigating dozens of doctor appointments a month. I live in a safe area where my partner and I can express our love freely, and where I can display Pride flags without a fear of violence — despite having our flag stolen at least once a year.
But it’s this privilege that I lean into to share my story, both for the people in these communities and those who love them. It’s how I’m able to write columns for Hypoparathyroidism News and write books with disabled and queer characters. These efforts help lift the visibility of both of my communities.
The parallels in my journey
Discovering my bisexuality (attraction to more than one gender) was almost as difficult as getting diagnosed with first hyperparathyroidism (too much parathyroid hormone) and then post-surgical hypoparathyroidism. My symptoms and experiences were often disregarded, so it took me a long time to get answers.
Searches of “Why am I so sick?” were followed by searches of “Why do I want to kiss girls and boys?” My local library was not helpful, and my pre-Google search engine couldn’t find answers. My symptoms mirrored pregnancy, eating disorders, and anxiety. My searches about being attracted to multiple genders were met with bi erasure (the denial of bisexuality). Both only led to more frustration.
Doctors just gave me pregnancy test after pregnancy test instead of running and investigating labs, and then my fellow queer friends told me I had to choose between dating men and women, and that dating both was selfish. The parallels never fail to astound me.
When I finally got answers about my hypopara, I became hyperfocused on my chronic illness journey. It wasn’t until my early 30s — after I was married — that my health and life were stable enough for me to feel comfortable labeling my sexuality out loud.
Hypopara and bisexuality are not just footnotes in my life; they both take up space in a big way. I’ve learned to embrace these parts of me, especially during June. I’m so lucky that my partner supports and loves how much I continue to grow and change since discovering and embracing my whole self.
I am grateful that Bionews, this website’s parent company, gives me a chance to share my voice and challenges me to be uncomfortable sharing the vulnerable parts that I previously kept hidden. Each column strengthens my advocacy work, makes me more comfortable in my own skin, helps me improve my writing, and supports two communities that I deeply love and cherish.
As I move through June, it will be with both a happy heart and the knowledge that there are still many more battles left to fight and write about.
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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