Don’t get me wrong, I have some really supportive friends who are really understanding about my endometriosis, and who really want to learn more about it. But, there are still things that I wish I could say to them that I just don’t feel able to. This is not because of anything they have said or done, these are just topics that I struggle to talk to people about mainly because of the way that it might come across if I don’t get my words right.
The first is, please don’t compare your period pain to mine. This is not me saying that your pain isn’t as important, or that I don’t have sympathy for others in pain, or that I just don’t want to listen, because I do. The key word in that sentence is compare. I don’t think of myself as the only person with bad period pain, but the pain described by the majority of my friends is very different to what I experience. I struggle when I’m talking about my pain and it’s met with an answer along the lines of “yeah, mine can be quite bad sometimes, but I find ibuprofen and a heat pack really helps me”. Similarly, I doubt any of my friends would find it helpful if they were talking about their period pain and I chimed in with “there are some days that the pain is so bad that I can’t go in to work, or end up curled up in a foetal position on the floor”, because to me that seems like I’m belittling their pain and not taking it seriously. So, by all means, talk about it – I’m always more than happy to talk and listen, just please don’t compare.
The next one is to my friends with children, sometimes I find the thought of spending time with people who have children difficult. This is not because of anything you or they have done, but because of the massive question mark hanging over my fertility odds. I feel really guilty about this one, because I really enjoy spending time with you (and your kids when they’re there) but sometimes it just makes me feel sad when I start to think about how I may never have this. There have been many times when I’ve considered pulling out of plans involving children, because I’m really worried about not being able to handle it and keep a smile on my face.
Finally, I wish I could tell you just how bad endo makes me feel. I don’t like to bang on about it, and be that person who talks about how bad they have it, so generally when people ask how I am during a flare up my response is “yeah I’m ok, bit achey, but I’ll live”. The truth? I feel like someone is slicing through my uterus, my ovaries are about to explode and my uterus is definitely trying to kill me. But I don’t want to seem like a burden,or the person who is perpetually ill. I don’t want to be the unreliable one, or the one who constantly cancels plans or needs to change plans. There are some friends who I am this open and honest with, but 99% of the time I massively down play how I’m feeling to the extent that one week after my surgery I was at Kew Gardens walking around trying to keep up, and when people asked how I was I said I was fine. By the time I got home I was so exhausted and sore that I barely moved from the sofa for the next couple of days.
Maybe I will start to be more honest with people about how I’m feeling, but I don’t lie to anyone to try and hurt them, I do it to try and be nice and not make anyone feel bad. I don’t stop myself from saying these things because I don’t think they’ll understand or care, on the contrary I know they’d be really supportive, I do it because I don’t want to feel like a burden to them or put a downer on the time I spend with them.