Endometriosis can be really horrible. We can feel a deep sense of ourselves almost being stripped away with the pain and inflammation that comes with Endometriosis. It can feel frustrating and incredibly isolating when somehow the pain just lingers and you feel hopeless and angry all at the same time.
Now, normally when we experience so many emotions and thoughts we turn to those close to us in the hope that they will offer us some sense of support or understanding. We want them to guide us, to give us a sense of hope perhaps or to just give us some sympathy with what we are experiencing. The trouble with Endometriosis is that it isn’t easy to support by those that don’t share the experience.
Here’s why… (don’t worry, I will share how you can cope a little further in the article for you!)
1. Endometriosis can’t be seen
I tried for years to explain to others what I was feeling with Endometriosis. I used every descriptive word I could find in the dictionary: aching, throbbing, pulling, pulsating, gnawing, deep wrenching pain.
No one quite understood what it felt like. My best description which seemed to get some sort of sympathy was: “It feels like you have a bad case of diarrhea but you can’t poop it out!” Men seemed to understand this analogy the best!
I would sometimes yearn for a way that I could just share the pain with them, even if it was just for 10 minutes or so, just so I could get some understanding and sympathy. Like in those sci-fi movies where we could just touch them for 10 minutes and they could feel what we feel… After years of trying that, I eventually got into a state where I almost wanted to break an arm or a leg, just so I could get some form of sympathy…
If we were open, like our inside bits could somehow be seen by those around us, perhaps they would understand. Perhaps, if there was like a super duper magnifying glass that could look inside and show others all the cysts, adhesions and inflammation, then perhaps they would understand.
The truth is, they can’t see it or experience it. It is hard to explain, and throbbing and aching just doesn’t come close to explaining how we feel.
2. It is just not that well known… yet!
Talk to someone who has cancer or tell others about someone who has cancer and somehow they instantly get the sympathy nod. Our hearts bleed for those with cancer and even though we may never have experienced cancer, we somehow can feel the pain and worry about having it.
I personally believe this relates to all the articles, TV commercials and media out there about cancer. We seem to connect with the condition because we have seen more about it. Does that make sense? We are somehow conditioned into understanding cancer.
With Endometriosis, there just isn’t that much information or publicity around the condition. Yes, many women suffer from it but it just hasn’t gained the media attention like cancer has, and so others don’t understand it or appreciate the struggles of the condition.
Most people don’t understand what Endometriosis is or why it would cause pain. It is also super hard to explain to others and after you mention words like fertility and cysts, you have probably already lost them!
3. It ties into our emotions and stress levels
There is a HUGE disadvantage to having Endometriosis pain! It tends to flare up when we are stressed or feeling emotional and this can often leave us feeling quite hysterical. I know… I have many breakdowns because I just wanted someone to understand!
The trouble is, when we get like that, you know the crying, the yelling and the desperate state of just wanting love and attention, others around us will just back away. I know this is soooo hard to accept!
I tried it for years and I can tell you that most people will not cope well when you are all emotional and freaking out around them. The trouble is, with Endometriosis the pain and the hormones often go hand in hand and it is quite easy to have this reaction.
I actually found it quite useful to almost pre-warn those around me of days like that. I would tell them, if I ever have a freak-out moment, where I am sore and emotional, to just hold me or tell me that everything is going to be okay.
Not everyone will do this though but it helps to pre-warn them if you have that kind of support.
The reality of having Endometriosis and getting support
I think after years of trying to get sympathy and love during those moments of pain and frustration, I eventually just accepted that no one will ever truly understand what I was experiencing, except of course Endo Sisters! It was my own condition and it was mine to cope with.
If I had a pain day, I would just tell everyone that I was having a pain day and stay at home and just look after myself. I would spend the day loving myself, the way I would want others to love me. I would have a nice bath, say loving things to myself and just treat myself like I was my best friend. This is incredibly powerful!
If there were people who wanted to know more or truly understand what I was experiencing, I would share some website links with them, so they could see what Endometriosis was and perhaps identify with what I was feeling. However, I didn’t seek their sympathy anymore. If they gave some anyway, bonus!
I established a space where I got support
I then created a space where I could give and share support for myself and others in an online community. The idea was mostly so I didn’t feel so alone with having Endometriosis. I wanted to know that there was a safe place that I could turn and share my struggles, without judgement or feeling silly.
It is called the Natural Endo Sisters Community.
It is really tough having Endo but knowing that I wasn’t alone was a big part of feeling better.
Acceptance is a big part of feeling better with Endometriosis.