The Mighty Logo

Why I Can't Find a True Sense of Community in Endometriosis Support Groups

The most helpful emails in health
Browse our free newsletters

One of the many conditions I have is endometriosis, a condition where uterine tissue grows outside of the uterus. It affects every woman differently, but can be an extremely painful disease. Since being diagnosed, I have found that it unfortunately can be a common issue, and there is a growing sense of community for these women, especially on the internet.

But not for me.

Despite trying to find blog writers, groups, and forum boards about this health problem to learn and connect with others, I am unable to find a true sense of community. But I have the same disease, right? Very true.

However, my issues are still not the same. You see, I have never wanted children.

I have never felt the tug of heartstrings when looking at a baby. I have never had the strong desire to be pregnant and raise a child. In fact, over two years ago I was voluntarily sterilized to ensure I would never have kids.

Now, I have plenty of reasons for not wanting children, and while a major one is my health, it was not the main deciding factor. I chose to be sterilized before my chronic illnesses reached the level of disability.

However, it is still extremely stigmatized for a woman to not want children.

The majority of women, though there are plenty of us out there that do not want them, desire having children. And because of that, I have been unable to find my place among those living with endometriosis. After the pain, the most common issue many women with endometriosis face is a loss of fertility, and subsequently, the loss of a lifelong dream.

I know that those women must feel incredible heartbreak by having a medical problem that may make them infertile. My conditions have taken many things from me that I wanted for my life, so I understand the pain.

However, the majority of support in communities for women with endometriosis is dealing with infertility issues. My infertility obviously does not bother me. I chose to be sterilized, and even if I hadn’t had endometriosis, I would’ve made the same decision. Childfree women can already feel very shut out from society based on stereotypes, assumptions, and the social norm, but it’s even more prevalent in support circles for endometriosis.

My decision to have children now seems to be only “OK” to others in society because of my chronic illnesses and disability. It truly invalidates my choice, one I would have made even as a totally healthy individual, while at the same time making the assumption that women with disabilities or illnesses shouldn’t have children. My position shows the ridiculousness of both sides of the coin. Unhealthy women “shouldn’t” have children, but they should want them no matter what because that’s what women do.

I’m sure that there are other women out there who are the same as me, but unfortunately I have not had the pleasure of coming into contact with any of them. Does this mean my suffering from the disease is less than those that do desire children? Who can say? One thing I can say though is that I hope someday my suffering can more widely be considered valid, despite not wanting children, in the same way that I hope my choice to not have children will be seen as valid as well.

Getty Image by nrqemi

Originally published: April 18, 2018
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