Navigating Life With HS & Type 1 Diabetes (Part 2)

In case you missed it, check out Part 1 of this series!

Realistically, I couldn’t blame all of my struggles on my circumstances because I also didn’t have good habits when it came to checking my blood sugar and I may have forgotten to actually take my insulin on more than a few occasions. And when it came to things like health insurance and prescription co-pays, I was completely lost.

Eventually, I learned more about insurance, got on my university’s health insurance plan, and figured out prescription co-pays. But then I fell into this really unhealthy and unproductive cycle of needing to go home every three months for diabetic blood work and check-ups, but then skipping my appointments because I couldn’t figure out how to get my blood sugars in order and didn’t want to deal with the negative emotions that would follow my doctor’s visits.

Even though I’d probably find eventual success in treating my diabetes if I’d just, ya know, went to my appointments. I didn’t have the best logic when I was 18, don’t judge me.

My hidradenitis suppurativa was at its peak

Meanwhile, my HS was at its peak. I didn’t know how to deal with it or what was causing boils. And other than having a boil so big I needed to get it lanced, no doctors said anything about it. Throughout most of my college career, I suffered from HS and diabetes in silence. My friends knew I had both diseases, and so did my family, but I kept a lot of my struggles to myself.

We’ll fast forward a few years later to when I discovered Jackson Gillies. If the name sounds familiar, it’s because you may have seen his face around HS communities. He gained a lot of attention for his time on American Idol where he auditioned by singing Foy Vance's “Make It Rain”.

Not only did he sound incredible, but it was a huge deal for me at the time because it was the first time I’d seen a public figure who was open about navigating HS and type 1 diabetes like I was. Not to mention that because of his audition, people like Katy Perry, Lionel Richie and Luke Bryan now knew about HS. He had such a positive outlook on life and turned towards his creativity to help him cope with the nuances of managing both diseases and that really inspired me on my journey.

Type 1 diabetes and HS are a part of me

I try to remember that whenever I struggle with managing those diseases now.

I eventually got two surgeries to address my HS under my arms when it got to its worst point in 2019. I even went back to diabetes education and finally learned about insulin-to-carb ratios. Apparently, those weren’t just supposed to be one-time classes. Who would’ve thought?

Ultimately, I learned that I needed balance. Or at the very least a good grip on prioritization. Both diseases are a part of me that I live with and need to address daily. Things like living a healthy lifestyle help both of them, but I also don’t have to have it all figured out. I’m grateful to my health care team and the HS communities I’ve found online for all that I’ve learned. But for the most part, I’m okay with managing my health one day at a time.