Chronic Rants

It’s been too long, and I’ve missed you all! After hundreds of posts (this is #799!) you’d think I’d have run out of things to say about living with chronic illness, but not yet. Sadly, there’s always something else. I have something particular on my mind today, and from what I’ve heard, a lot of you have had this on your mind at some point, too, so let’s dive in. Maybe in writing this, I’ll figure out what I should have said yesterday….

I had my big lightbulb moment 8 or so years ago, sitting at lunch with some other folks from my chronic pain support group. We had just finished the meeting, and were generally chatting. One person talked about her endometriosis pain, and the only guy there was uncomfortable and asked that we not discuss it. I was horrified. Why should we not discuss it? It’s what she was dealing with! Why do so many people of all genders feel that it’s ok to minimize or ignore any problems around menstruation, women’s reproductive organs, and women’s genitalia? Ok, I know the answers, and I won’t get into all of that. but let’s talk for a moment about the bigger picture here.

Pain is pain. Her endometriosis pain was as valid and worth talking about as his rheumatoid arthritis pain and my connective tissue disease pain. And by not talking about it, not only are we hurting sufferers by forcing them to be silent, but we are also limiting knowledge for everyone. I had heard at a young age about periods being on a regular cycle, but I was older before I understood that was a real thing for many people. It felt like a myth to me. To be honest, I still find it hard to believe that there are people who can predict when they’ll get their period, how long it will last, and how heavy it will be. Speaking of which, I was also shocked that my amount of bleeding wasn’t normal. Again, we don’t talk about these things, and I hadn’t known.

So often, anything related to menstruation (or even women’s emotions in general) are passed off as being due to hormones, as if (1) everything can be attributed to hormones and (2) anything caused by shifting hormones is invalid. WRONG!

And this is why this topic is on my mind today. Thanks to polycystic ovary syndrome (PCOS) I have a very irregular and often heavy period. Yesterday I was in a lousy mood, and a bit impatient with the person I was working with via Zoom. I wanted to explain that it was because of my period. But I didn’t. This is a relationship where I definitely would have said I was grumpy because of severe knee pain, but mentioning my period felt inappropriate. And I was afraid of being passed off as hormonal.

Sure, sometimes the grumpiness is hormonal, but that’s not what it was yesterday. Yesterday it was that my period disrupted my sleep two nights in a row, every time I stood up I felt myself leaking, I was having to go to the bathroom constantly, my appetite was all messed up, and I had lost a lot of blood, so I was weak from the blood loss on top of the rest. (More than once I have had a doctor send me to the ER due to blood loss so I could be checked out. It wasn’t to that point, but it was still a lot.) I think that anyone who had these symptoms could have felt grumpy, too. If a guy had suffered two nights of bad sleep and then had lost a lot of blood, I doubt anyone would tell him to cheer up, get over it, or “just deal with it.” Yet we give that message to anyone who menstruates. That’s really fucked up.

And frankly, if my moodiness had been due to shifting hormones, that would have been perfectly valid, too! Shifting hormones sucks, and it’s treated as a minor things that women should be able to…. what? Ignore? “Overcome”? I’m not sure what is even expected, but I know that it’s unrealistic. At their worst, those hormones have been all-consuming for me, and it can really suck to live that way for even a day or two. I have struggled with it, and being told it isn’t a real issue is definitely not helpful.

I want us to be able to talk about this. If I’d been talking to a cis woman or a trans or non-binary person who had gotten periods, I might have said something more honest. But since I was talking to a cis man, I simply said that I was tired from two nights of bad sleep. It was a woefully inadequate partial truth. What should I have said instead?

What I want is for “I’m sorry I’m in a bad mood. I have my period and the blood loss and lack of sleep are getting to me” to be as easy to say as “I’m sorry in I’m a bad mood. I have a lot of pain in my knee today and the pain and lack of sleep are getting to me.”

What do you think? Should I have said the former? What would you have said? I’m really curious to hear from others who have been in similar situations. The whole thing is frustrating. We all know that sometimes that hardest part of chronic illness is the lack of understanding and compassion from others. And it’s so much worse, I think, when it’s not considered socially acceptable to even mention what we’re dealing with.