Diabetes and menopause – there are two things that have an image problem! Diabetes’ image problem has been discussed a bazillion times on here and is well documented by others.
And menopause? Menopause is middle-aged women; women who are past their prime and ready to settle down with a pair of slippers and a good book. Women who are a hot mess rather than just hot. Angry old women who are, at best, easily ignored, at worst, are given labels such as the incredibly sexist and derogatory ‘Karen’ thrown at us, especially if we dare demand attention for issues that are important to us. Oh, and we are invisible, apparently.
Well, fuck that. I am none of those things. I am as loud and out there and determined as I have always been. Sure, I like the idea of settling in for the night with a good book and a cup of tea, but I’ve been like that since I was in my twenties. And the anger isn’t new. Being radicalised as a kid does that to you, and I fairly, squarely, and gratefully credit my mother for it.
Turns out that my attention now is being turned to an issue that is one of too little research, too little attention, and too little available information that is relevant, evidence-based and engaging. And that is diabetes and menopause, and perimenopause.
Yes, I’ve written before about before. Missed it? Well, here you go: This time; this time and this time.
If you jump on Twitter now and search the words ‘diabetes’ and ‘menopause’ you’ll find a number of discussions which have been started by people with diabetes who are desperately looking for information to do with the intersection of these two topics. As well as information, people are asking to be pointed to examples of others who have been through it and are willing to share their stories. At the recent #docday° event, the inimitable Dawn Adams from IRDOC gave a rousing talk about why we need to focus more on this issue. (Follow Dawn on Twitter here.)
Here’s the thing: I still get diabetes and pregnancy reminders from my HCPs despite being 48 years old and very clear that having a baby right now (or ever again) is not on my to-do list. Been there, done that, bought the t-shirt and have an almost fully formed adult to show for it!
And yet despite that, I still get reminders about how important it is to plan for a pregnancy, take birth control to prevent it, and make sure that I take folate. Cool. That’s really important information. For women planning to get pregnant (and the birth control bit is important for women looking to avoid it).
But more relevant; more targeted; more person-centred for me is information about perimenopause and menopause.
Just over twenty years ago, when I was looking for information about diabetes and pregnancy, there wasn’t a heap of it. There was, however, a lot of research about it. What we really needed were resources for people with diabetes who wanted information that didn’t look as though it had been written and illustrated in the 1980s. We wanted the evidence-based materials that didn’t scare us. And so, working with other women with diabetes who were the same age as me, and looking for the same sort of information, we made it happen. The diary I published online when I was pregnant added to other stories that were already there. It was hugely reassuring to know that I could find others who were sharing stories that either mirrored my own or suggested the path that mine might follow.
These days, it’s super easy to find stories about pregnancy and diabetes. You don’t need to search too hard to find and follow diabetes pregnancies on Instagram, from pregnancy announcements through to delivery announcements and every twinge, craving and diabetes concern in between.
Less so menopause. Look, I get it. What’s the cute, good news story here? With pregnancy stories, there is a baby at the end – a gorgeous, cooing baby! There is nothing like that with menopause. Despite that, I think there are stories to tell and share. And a community to provide support and lived experience advice.
Right now, there is a chorus of people in the diabetes community who are calling out for this information and talking about the topic. I’m willing to bet that a lot of us were the ones who, twenty years ago, were calling out for decent diabetes and pregnancy info.
I’m not a clinician and I’m not a researcher. I don’t write grants for studies about menopause and diabetes that suddenly put this topic on the research agenda and start to help grow an evidence base. But what I can do is generate discussion and create a space for people to share their stories, or ask for information in the hope that others will answer the call.
The ‘The Diabetes Menopause Project’ isn’t really a thing. It’s a community cry to generate that discussion and some lived experience content. There are some great pieces already out there and I can’t tell you how many times I’ve pointed people to those blog posts and articles. But there needs to be more, and they need to be easier to find.
And so, to start with, here is what I do know is out there. If I’ve missed something, please let me know and I’ll add to it. At least then there is an easy one stop place to find the limited information that is out there. Get in touch if you have something to share.
The Big M – More Taboo Subjects, from Anne Cooper.
Type 1 and the Big-M – a five-part series from Sarah Gatward about her personal experiences of type 1 diabetes and menopause from Sarah Gatward
Managing Menopause and Type 1 Diabetes – also from Sarah Garward, published by JDRF-UK
Menopause + Type 1 Diabetes – Ginger Viera’s writing for Beyond T1
I hosted a Facebook live with endocrinologist, Dr Sarah Price where, amongst other issues, we discussed diabetes and menopause
Research!! This journal article looks at the age menopause occurs in people with type 1 diabetes