The Mighty Logo

The Loneliness You Experience With Endometriosis

The most helpful emails in health
Browse our free newsletters

Loneliness is there in all of us. For all different situations. When you are constantly in pain or ill, it’s a type of loneliness that some people can’t describe. I look around and see so many people my age having the time of their lives. They are getting married, having children, going on holidays and working their dream jobs.

Maybe it’s a jealousy thing; I’m not out there, doing those things. I have a wonderful partner, who has two kids, who bring so much light into my life. I have a beautiful niece and a niece or nephew on the way and a family who does their best to support me. Yet here I am, curled up on my bed with a heat pack, feeling like I have the world on my shoulders.

Endometriosis has taken so much of my life. It has cost me friendships, jobs, relationships. Many people think I’m saying no and letting them down on purpose. I’m sorry but right now, I have to stop to rest even on the best days. Endometriosis costs me sleep. I have to get up multiple times a night because now, this disease is affecting my kidneys and my bladder, so I constantly need to pee. Then my partner sometimes wakes up or feels me moving around, so then we both have broken sleep because of these issues.

Endometriosis has taken so much from me, leaving me feeling lonely and sometimes broken. Trying to explain to the people I do have near me, they sometimes just don’t understand. Yes, I know they do their best. But having to contact your partner while he’s at work simply because you’re in pain, or you’re bleeding so you know this evening isn’t going to be easy… This condition affects not only myself but others as well. How do you tell your stepsons that you can’t go swimming because of your bleeding? How do you tell them that you want nothing more than to be able to run with them at the park but knowing this will cause more pain and more bleeding? So yes, I still waddle and feel like I drag my heavy and aching pelvis to as many things as I can, but it still leaves me feeling left out.

Recently, my partner and I, along with friends of ours, wanted to learn to ride dirt bikes. Because of this disease, I couldn’t always go along. I would often say no to going out with them because I know I would be angry and jealous seeing them enjoy it and not myself.

I am trying so hard to overcome this. I am trying to learn to be OK with telling my partner things. Who likes telling men things about your reproductive system, anyway? But when it is controlling my whole life, I have to. I feel like a rotten girlfriend for not being able to be intimate like I want to, for not being able to always go out and most of all for not being able to help financially provide for my family. I’m trying to be honest with the few people I have in my life, to explain things. I want them to know I’m trying, but sometimes even trying is too hard.

I am doing everything I can to surround myself with support and with love, but I can’t help but think of what I am missing out on. I can’t help but sit here and feel lonely when I see everyone doing something I simply can’t do, like swimming or dirt bike riding. I hate that it’s sometimes mentally difficult to be around children because I’m trying to deal with not having my own. I’m trying to overcome the fact my reproductive system is making my whole body unwell and because of that, a biological family is out of the question. My heart breaks every day because of this.

There is a positive in here somewhere and I might still be trying to find it. Endometriosis has been a battle for me for what feels like a lifetime and will likely be a battle for a long time to come. I know I’m trying, and sometimes maybe that is enough.

A favorite quote of mine about endometriosis says, “Whatever you can do, I can do bleeding.” It is so beyond true. I am trying my best to live by this.

Photo by Esther Driehaus on Unsplash

Originally published: May 4, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home