On Cacti, Chronic Illness & Soul Cysters

I live and die by a philosophy of vulnerability because I believe that sharing our lives with one another unites the human experience.

That being said, there’s something I haven’t shared on this platform quite yet.

A lot has happened in my world since the last time I wrote to you. I keep putting this blog on the back burner until I sort out my life, but even now it occurs to me that life will never quite be sorted in the way that I imagine it to be. Even now I’m scrambling to put all the pieces together. So let’s just dive right in…

Recently I was diagnosed with a chronic illness called Polycystic Ovarian Syndrome (PCOS). Clinically, PCOS is a hormonal disorder in women that leads to insulin resistance, metabolic syndrome, depression, and infertility. Practically, it means that I constantly feel like I have the skin of a prepubescent tween, am bloated like a hippo, and my hormones are all over  the place.

In the past few months I have spent countless hours in the doctor’s office being poked and prodded by all means of medical tools, scanned with ultrasound goop and CAT scans alike, and sifted through a plethora of medical blogs and consultations. Finally, come April, I was diagnosed. And even though I could guess what was coming based on the symptoms I presented, I was utterly unprepared for what the diagnosis would bring.

After years and years of wondering if I would ever know what was wrong with me, the diagnosis was a bittersweet epiphany. A PCOS diagnoses compromises everything that feels so uniquely precious about womanhood. One woman said, “PCOS strikes at the core of who we are as women.”

For myself, as a woman who has struggled with and against her femininity her entire life, this is a particularly acute observation. It wasn’t until this past Spring, as I was processing more and more of my life after graduation and post European-AJ takeover, that I realized that I have spent the majority of my time feeling guilty for being born a woman. Growing up with boys meant that I was the only one who could never pee standing up outside, it meant that I couldn’t play as “rough” as my cousins, it meant that I had to keep my belches contained and my feelings had to always be linked back to feminine sensitive.

I’m still processing it all. But it is indeed a strange thing.

I think the most devastating part has been the caveat of infertility. I’ve dreamt of being a mother since the time I could speak. I’ve always loved working with kids, and spending time with babies, and with the diagnosis came a conditional “this doesn’t make you infertile, but you’re likely to have trouble conceiving and you’re way more statistically probable to miscarry.”

As a single woman in her twenties I’m not quite sure how I am meant to process that news. I think my hidden fear is that because my ovaries are broken no partner will ever see me fit for anything long term.  A darker component of that is that because of my symptoms, no one would even try.

I’m on a strict workout regimen and diet plan these days. A lot of the research behind PCOS says that weight regulation is a massive component in taking care of the symptoms. That being said, I’ve lost four pant sizes in the past two months and still have worse symptoms than the day that I was diagnosed. I go to doctor’s appointment’s every week. I take ten pills every morning. I feel nauseous all the time. I sleep an obscene amount but am always tired. It’s, truly, such a time to be alive.

And after all of that, I’m not even fully convinced that I actually have the disease.

But only time will tell. For now I am in a whirlwind of emotions trying to figure out where to go from here.

And that’s where the cactus comes in.

Recently I went back to my hometown in Northern Arizona, a week before my official diagnosis, and got to spend time with my cousin who has also been diagnosed with PCOS. After a lot of conversations about my symptoms, I was pretty convinced of what the diagnosis would bring. We bonded over what it felt like to finally have someone that understood what we were going through: how it felt to be bloated all the time, how it felt to constantly be told that if we were just a little less “fat” all of our problems would go away, how it felt to have the core of our femininity assaulted at all hours, how it feels to never be in control of our own bodies.

So we decided to get cousin tattoos to celebrate each other. She got a stencil of an evergreen and I got an outline of a saguaro and whenever the reality of chronic illness feels all too overwhelming I run my finger over the outline and remember that I am not alone. I have soul-cysters across the globe, but I’m lucky enough to have one in my bloodline too.

Chronic illness is terrifying for a lot of reasons, and forces me to process things anew every day, but ultimately I know that my whole life is out of my hands anyway. This is as much a test of faith as it is a test of tangible strength.

This is not fatal, I am lucky enough to live in a time and place when & where I can fight this. One day I will learn what this is supposed to look like.

 

Until next time, wonder on. xoxo

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