The Struggles Behind Living with Endometriosis
Thursday night I woke up in a blur of pain, scrambled for some painkillers and when I was awake enough to realise the full extent of the pain levels I was experiencing - sobbed my heart out. I mean really really sobbed. I sobbed because I came on my period a couple hours earlier with no pain and for some reason (even though I ate a lot of trigger foods over Christmas) I was in a really positive place and thought that maybe my positivity had 'fixed' me this time, at least for this period. I cried because I felt genuinely heart broken and foolish for thinking I could have stopped this pain with my state of mind, even though I'd been piling lots of sugar and caffeine into my body, which I know always equals a bad period. I also cried because part of me felt ashamed that I was in this state, suffering so badly, when I am writing about living with endometriosis and thriving despite the disease. Yet here I was doubled over unable to control these seriously great waves of pain and heaves of heartache going through me.
Afterwards, it got me thinking about Jess Lively's post "Things I'm Afraid To Tell You" which went viral and caused a sea of bloggers to also open up and tell their readers about their fears. Jess has since done a podcast version of this (a good couple of years later after her original post) and that was the first time I came across this. It really moved me and left a mark in my mind, so naturally when I was feeling ashamed about the levels of pain I was experiencing and wondering what you would all think about the state I was in, I began thinking of all the other stuff I'm scared to tell you. Jess did this as a release for her, so she could move forward and be her most authentic self with her audience. I think I'm doing this for the same reason and also, maybe, so you see that I am still real. Even though I am doing well on my endo journey, I still struggle.
The Things I'm Afraid To Tell You About My Life With Endometriosis
So, below are all the things I'm afraid to tell you. I hope that this brings us closer together, rather than further apart. I am genuinely super scared I'll be judged for the below, but here goes...
- I cried because in that moment full of pain, because I thought "What if all I'm doing doesn't work? What if I don't get there? What if I don't get it under control and this is my life?" Sometimes I lose hope that this will work, but I promise you, it always comes back.
- I cried because I thought about all the periods I still have left in my life and the many days I may have to struggle with work/social life/life if I don't get this under control. Sometimes I can't face the thought of living the rest of my life alongside this pain.
- I cried because I'm so desperate to be something bigger, to achieve my dreams, and endometriosis slows me down and wipes days off my year in one fell swoop.
- I am also afraid to tell you that I am feeling so much better emotionally and my pain does only lasts 1 -2 days a month, most of the time. I'm scared that if I talk about my 'good' days too much, I'll lose my connection with the community.
- Sometimes I'm so overwhelmed by the stories and sadness put out in the endo community that I think I couldn't possibly help these people and feel like what I'm doing is pointless.
- I don't think I want children. I don't talk about it because I know so many of the women in our community do and I'm scared that I'm going to be viewed as a hard and cold. I don't know how to write about the issues around infertility and losing a child, so I just avoid it altogether.
- Most of the time I have to drag myself through writing a post. Either because I have so much else to do, or I'm tired, in pain or yearning for some kind of freedom because I'm feeling depressed or overwhelmed. However, I am always proud every time I finish one.
- Some days I feel really really desperate for an answer. Something to just WORK completely. I know I haven't exhausted all options and I know I am doing so much better than I was and better than many other sufferers out there, so I can't complain, but I just want this pain to stop.
- I feel that if I don't find that answer I have failed you and that I'm a fraud.
- That sometimes I'm really jealous of people who are well and healthy and free from drama and their lives just sail along without the emotional and physical roller coaster that I go through each month.
- Sometimes when people talk about periods, in my head I'm like 'Maybe you shouldn't say that so loudly?" even though I write and talk about them all the freaking time!
- I struggle with the endodiet every day. Not because I don't like the food, but because sometimes trying to find food you can eat on your lunch break is like trying to find buried treasure without a map.
- I still eat some (or a lot) of sweet stuff at the weekend. It's always natural sugars, but enough of it is still a trigger for me. I want to be able to do better and feel like I am practicing what I preach.
- I have avocado on sourdough toast nearly every weekend and coffee. Both are not good for me. But I just can't get my head around sitting in a lovely café at the weekend and not having those things.
- That if I do 'heal' myself i.e. stop experiencing pain and needing operations, that I won't be able to help the community anymore.
- That I'm going to run out of things to write about.
OKAY. Deep breath in and out. That's it, I'm done, I've put this out there in the world... I hope you can understand where I'm coming from with some of these, I'm far from perfect and I'm on a journey towards healing, I'm certainly not there yet. I want you to know that I'm still on this journey with you, not ahead, or behind, but side by side.