Communications: one way to understand endometriosis

by John Blondin, MENDO (Men and Endometriosis)

I get many letters from people, mostly women, about the fact that their significant other does not want to talk about the problems that this disease causes.

I just got another letter where a young woman says that her boyfriend no longer wants to talk to her about this disease and calls her “diseased.”

It saddens me so to hear this.

I know that sometimes it is very hard to deal with the complications of endometriosis and all that comes with it, physical as well as mental. I also know just how hard it is at times to bite your lip and not say things that you feel – and this goes both ways!

And I know how hard it is to not feel anger at the person with the disease because it feels that we do not have control over our own lives: endometriosis does.

Feelings are human

We are all human, and we all have human feelings.

The key is not to let the emerging feelings out and let them hurt the one that we love. The hardest thing in the whole picture is to be honest with your mate and your mate with you.

We are taught not to hurt people if we can help it. We are taught to not say things without thinking first. But we are also human and sometimes things come out during stress or anger or frustration that we regret. So the hardest part is trying to communicate our feelings, our needs and our wants without causing our partner to feel worse because of it.

From what Carey, my wife, has told me, and from the things that I have read, women with this disease feel guilty because they are – in their minds – the cause of the problems. Carey says, “We are the problem.” But I counter with, “No, you are not the problem, but the disease is the problem.” It may not be a real big difference, but I feel that by placing the blame on the true culprit, it makes me feel less anger towards the person and more anger towards the real cause.

I know that my partner is not normally this way but is acting this way because of the way that she feels. Chronic pain does things to a person. If she gets short with me about something, I have to look past that and see that the pain is talking, not my wife. Doing this makes it easier for me to get past her anger because I know that I am not at fault nor did I do something to cause it.

Talking things through

It took me a long time to learn this and a lot of days thinking that she did not love me anymore or wondering what I did wrong. We had to sit down and talk about what hurt us. It was not done in one sitting, but it was done. Once we got past that, the rest was easy.

If face-to-face does not work, try calling on the phone or writing a letter. You have to have ground rules:

no yelling
no name calling
no blame

Both need to understand that it is endometriosis that is the cause, not the person.
And, understand that both of you are human with human needs and wants!