16 April 2020

Tine’s story on hormones and type 1 diabetes

I received my diabetes diagnosis in 2013, and at that time I was taking the contraceptive pill. I didn’t give it much thought, and my healthcare professionals didn’t raise it either, so I figured it wasn’t a big deal.

Fast forward to 2015 and I experienced my first properly diagnosed depressive episode. Around that time I’d read a lot about a possible link between the pill and depression, so I came off it, hoping for an easy fix. Back then, I honestly wasn’t thinking too much about my diabetes. It hadn’t become a priority for me yet, so soon after diagnosis. So, trying something different was worth a try, right?!

It’s probably worth noting that this blog isn’t intended to debate the pros and cons of using the pill as a contraceptive method. It’s here more to talk about my road to discovering how our diabetes connects with different parts of our lives, and to shine some light on the fact that we don’t talk enough about birth control, our hormones and cycles. And to raise a question: why does no one seem to take this seriously?

Getting to know each other

After I stopped taking the pill, it took my body a long time to bounce back. First came the hair loss, then the acne. I was scared about the changes, but I’d started to feel better mentally, so I reasoned that things were going in the right direction. Eventually (and believe me, it felt like an eternity!) the hair loss stopped, and my skin cleared up. The only thing I was waiting for now, was for my periods to come back. It felt like time travelling back to being a young teen, and having to get to know my body all over again.

When my periods did start again, I had to tackle some bigger issues, like the fact that my diabetes was affected by my cycle, and vice versa. Why did no one tell me this could happen? Every cycle was different. Whatever I learned from one menstrual period taught me nothing about the next. It was tough, and I got pretty angry, but I was weirdly fascinated too.

So I started my research. I wanted to know everything there was to know. But it turns out there wasn’t much information to uncover. Online research showed that no one was really talking about it. I felt pretty let down. Despite being life-savers on other subjects, neither my diabetologist or my OB-GYN knew how to help. It started to feel like it was just me who had this problem. Was it my fault? I started taking notes.

Building the intersection

I wrote down everything about my cycle, with some help from a handy app. With the information in front of me, I started comparing. When did I usually need more insulin and when did I need much less? How did my body react differently to food over the course of a cycle? Step by step, note by note, I slowly became more aware of the changes my body was going through every month. It was chaos, but my note taking started to help me feel a bit safer inside of that chaos.

After the note taking, I started taking to other people with diabetes. People of all ages who experience hormonal cycles. I started to hold live sessions, where we could talk, listen and ask questions. Sadly, it became clear that everyone felt quite alone, like it was their fault, their own personal problem. And, to complicate matters more, everybody’s experiences seem to be quite individual. Some people experience strong BG fluctuations while taking the pill, others when they’re off it. Some even have other illnesses that complicate their ability to manage their cycles. And for those over a certain age, things could become even more difficult while they experienced menopause.

It felt good to talk, and to openly share our experiences, and even though I still felt very alone, it became clear that it wasn’t just me. I’m really thankful that I helped to break the silence and bring people together, even if it was anger and frustration that was unifying us! We all wished for a simple solution for the changes we were experiencing and accommodating on a constant basis. A standout memory of this time period for me was speaking to a person who worked for a well-known diabetes brand. During our conversation, something he kept repeating was “Oh, but it’s only once a month – you can live with this, can’t you?” I remember looking at him subtly laughing at me and thought of all the people I’d spoken to who wouldn’t find it funny.

Listen to us, please

Strangely, there are people out there who don’t believe that a hormonal cycle can affect diabetes and vice versa. Maybe you’ve experienced a HCP who’s silenced you or treated your situation with jest? I know I have. I don’t want to be silenced anymore. What would be really helpful, is if those people started to listen.

As people with diabetes, I want us to finally be able to take up the space this is ours, and to be seen and heard. A large part of that is to talk more about these issues in an open way, sharing real, valid and varied experiences. It would be brilliant if once our HCPs had listened, they could find solutions for us. I’d also like to rid myself and others of the shame and guilt that this topic can be surrounded by.

Back in 2015, when I stopped taking the pill, I never considered that things might go this way. Here we are, five years on, and there is still no real solution. And so I wonder, why is there so little information or us? Why don’t our HCPs know more about this topic? And why isn’t there more research conducted, and are we still often made to feel as though our real-life experiences are invisible? Why do I have to take a solo adventure every single cycle, trying to work out how much insulin I need and when, and why are some days just utter chaos, no matter what I eat?

For now, I’ll look forward to the day when I know more. Hopefully it’s not too far away.

About Tine