There are days when you wake up in the morning and you feel sore. You feel tired of trying and the idea of trying to pretend that everything is okay is energy draining. You just don’t want to face the world. The world seems big and scary and cruel. You feel judged and defensive. There is this niggling pain in your body and no matter what you seem to do, it is just lingering there all day. It creates this total feeling of unease and irritability. You just want to be miserable. Just for the day…
There is a strange kinda solace in this space. This space we create where we can just be miserable, in pain and alone. It is on a weird kinda level, kinda comforting. It is like you can just be. Be sore, be depressed, cry or scream or do whatever and you don’t have to worry about how others are judging you or worrying about you. You don’t have to feel guilty about being negative, or snappy or angry or for making others do things for you.
I used to feel this feeling often when my endo pain felt like it was mine alone to deal with. I never had any friends who had the same level of endo pain like me. I never had people around me who could share in my endo. I didn’t seek out help outside of my doctors’ advice and I just learned to live with endo. It became like this nasty alien that had moved into my body, that was now residing in there. The alien I had to live with, cope with and somehow naming it: “Endo” and using it as my reason for not wanting to go anywhere gave me a strange kinda solace. I actually almost sunk into that nasty place of misery on purpose. I would delve into that self-pity and loathing of my body and myself. On a strange level, I think I kinda owned it. It was my Endo and it was my misery and no one could take it from me, cos they couldn’t possibly understand or appreciate where I was coming from.
There is so much guilt and embarrassment I used to feel with Endo. I would hate it when I got pain spells when I was out with friends and they would have to comfort me. I didn’t like it. I hated being “the weak one”, the one that needed special care and I hated that everyone could do things I couldn’t. I felt excluded and like a social outcast every time I would get a pain flare-up around my friends. It was horrible. They would show such worry and caring but they had no understanding of what I was really going through. Though I loved them for it, it make me feel worse. I would feel anger cos I just wanted someone who would get it. I wanted to be able to allow them to feel what I was feeling, just for a minute, just for an hour and then they might understand me better. I got tired of having to explain myself and tired of needing someone to drive me home on some dire emergency, which I doubt they really understood. I hated feeling so pathetic and weak and needing my friends to be able to give that. I hated the dependency of it all.
So, it was often easier to just stay at home. Sink into my lonely world of just me and my alien friend Endo. It was better this way. I could loathe in my self-pity and cry if I wanted. I didn’t have to explain myself to anyone or pretend it wasn’t as sore as it was. It was easier…..
On some weird level I almost longed for that space. It was like a little hiding place where I could totally delve into myself and allow myself to feel really miserable. I know it sounds strange but I enjoyed it. It was mine and I could claim it. I could create it and control it. It is unfortunately called depression. My depression would be so bad that I would sometimes question why people would bother being positive. It was so exhausting! It required so much effort and that was something I just didn’t have at the time. Energy. Effort. Positivity.
I was depressed for some time. Many years in fact. I actually believed this was my life and that I should accept it as such. I remember actually having a conversation with a friend of mine way back then and saying: “Why do I have to be happy? or smile today? Nobody cares and I just want to be sad today!
Can’t I just be sad? What if I just want to be sad?”. I guess it was on that day that my friend really opened my eyes to the reality of life and how depression changes every aspect of it. You don’t believe you can heal yourself from Endometriosis anymore because you have given up. You don’t have the positive energy to delve into ways of healing or trying new things. You don’t believe there is a point. You don’t believe life will get any better and good things just don’t come your way. You walk around miserable and those around you avoid you, stay clear of that negative energy so opportunities no longer come your way. You don’t believe things will ever change, so you don’t make any changes. It just goes on and on and it all comes down to energy. Energy from your spirit, your mind and your body.
I look back on this time with such sadness and also recognition. I know many women with endometriosis feel this way. Often. It does come down to energy. It is exhausting being sick all the time. It is exhausting being positive and trying new things. It is exhausting trying…
The thing is, these new things are what give you hope. Hope is positive. It creates possibility. Possibility to change the current situation. If that means less pain, less soreness, less symptoms of any kind, it is hope. Hope is so powerful and can heal you on so many levels. Just having it there, can give you energy again to believe, believe that you can find a way to heal yourself from Endometriosis.
When I first started this blog I actually had a medical association comment on my site saying that I should not use the word “Cure Endometriosis” . Their exact words were: You should not give women false hope for something that has not been proven!”. I was horrified at the remark. To me, hope is one thing we need and should have. It is the one thing that keeps us going, keeps us searching for solutions. If we are always told: “there is no cure”, why bother? Why bother for something that may never happen. So, we should just learn to live in pain everyday?
RUBBISH is what I say!
There is hope my endo warriors and please, please don’t ever let anyone tell you there isn’t. There is so much out there to prove that it is possible. Please don’t ever give up hope. Please don’t ever believe you have to just live with Endometriosis. There is a way forward – I am proof of that! I never believed it was possible to get from severe pain almost daily to where I am now!
Just take one step a day, each and every day and start believing and you will find a way forward 🙂 You are special and your being here is special to me. Though the journey with Endo can seem like a hard one, there are so many lessons we learn about ourselves and our body. Life is a gift and though you feel like Endometriosis is a curse, it can be a secret blessing which heals your soul, your spirit and your whole body.
Lots of love to all of you out there, especially if you are having a rough day.
This Post Has 10 Comments
You are never alone Amber and I am glad my article was there for you. There are millions of women with endo. Seek them out and you will find them 🙂
You are very welcome. It does get easier, I promise 🙂
I am sorry to hear you are struggling so much with everyday pain. It does get better. I have been there too and now I don’t have hardly any 🙂
Get onto some MSM. That helps heaps to flush out the toxins in the body 🙂
I am newly diagnosed and dealing with a thousand other stressful things at the moment and I have been in so much pain and so depressed about it for the last week, it was so nice to read this post and remember that I’m not alone and I will get better. Thank you so much for giving me some hope on a day I really needed it! 🙂
Hi melissa, I really enjoy reading your mails. Even sometimes I feel like giving up, because I live every day in pain, but what you said in this email is true. We have to always live in hope. Hoping that one day we will get up and the pain is not as bad as it was the day before and hope is like a healing power.’
That makes it really hard! I am sure you are a fabulous mom when you are feeling up to it, so don’t worry about it too much. You will get there 🙂
Hi SJT. I am glad the post reached you and hopefully gave you some hope to see the better in life and what you can achieve. Unfortunately, our diet and everything we do is interlinked with Endo. Food can influence our moods too 🙂
I hope it gets easier and that I can find a way to make you smile 🙂
I think the autoimmune reaction is part of endo. It is a self defence of the body to fight off toxins.
It is all interlinked and we can find the source and heal that 🙂 Glad you believe like me!
The hardest thing I find, is that on those bad days I have two children to cope with, who cannot possibly understand and nor should they have to. These are the days when I feel most guilty – for not having the energy to play and be mum. I wonder if any of your other followers share this concern.
Ha! You have no idea.
I don’t know if it’s the combination of stress from school work, imminent exams, issues with my family at home, decision making, and the fact that I have endo- but I am in such a slump of depression right now, it’s unbelievable. Recently I’ve been feeling a sort of dull ache in that area almost daily, which could just be because I’m eating bad too. But my point is, if it’s not one thing that’s got me down, it’s another.
I want to believe this post. And I do, because obviously it’s true and you yourself have gotten through it. But it is hard to pull yourself out of bed and put on a brave face for the world every single day. I appreciate this post. 🙂
What did they say you could cure it or not?
I think the pain can be worse when you get other autoimune disorders with bad endo. I agree that it can be beyond overwhelming.Hope believes all things and endures all things.Someday the pain will be gone 🙂