I think I got a bit lucky that people probably expected this out of me.
Simply put, everyone who has baulked at me I tell them THIS is who I am. PE has simply become another thing in my life that has helped to create and shape the person I am today, just like athletics did in high school, and how law school will in the future.
My husband is supportive, not because he understands it or because he wants to think about it, but rather he knows its impotant to me and its just as much a part of me as our 2 children are.
My children came into this world when they did because of PE, and who knows what that will mean to them in 25 years.
We are like cancer surviors, for many, its not something they just shove behind them and say its done and over with but rather they take it to heart and it becomes a part of who they are, to the point its a label after their name.
Quite frankly, if it does mean that much to you, do what you want and tell them that it means that much to you. Then they have to make the choice of either ignoring something important to you (which can have some major drawbacks), helping you foster it, or giving you room and some encouragement.
We do not stay constant as a person, we grow and change depending on the circumstances and experiences we go through. This, like any other diagnosis is something that has to be ingested, processed, and then dealt with. Everyone deals with it in many different ways and people move through the process at different speeds.
Personally if it was me (and this is just what my personality is LOL) I would tell them to stop brushing me aside and if they prefer to ignorant and stupid so be it, but that I am not going to be the fool as its my life, my body, and my children going through it, and I dont give a hoot what they think I should do because last time I checked ignoring something never stopped it! (okay I am not very nice sometimes, but I did when we were discussing having our 2nd child have to tell my husband that it upset me greatly that he had a don't worry this won't happen again attitude whenever I talked about PE, and it was a protection mechanism for him, he was scared it would happen and didn't want to admit it could because then he had to deal with the fear)
One other thing that seemed to help here was to actually have someone in the medical field explain the condition to them. My OB was fairly open that we had about the same chance to get it again the 2nd time as I did the first. I also had doctor friends that sat my hubby down and set him straight on what PE really can do to me and the baby.
Also, everyone's perceptions and reactions changed once again after I had my blood tests done and they came back showing blood clotting issues.
Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason