I was diagnosed with endo a month ago, but I think it just r

I was diagnosed with endo a month ago, but I think it just really hit my boyfriend and what all it means. I think my having the flu really bad is what did it. He had it just before me and it was like a mild cold for him, but for me it's so bad my doc has instructed I bed on bed rest for at least a week and I have to drop my current online class. He went out with our friends last night and I guess explained what was going on with me because they were asking about me, about the endometriosis and about how bad my flu is. He came home and cried because he feels so helpless, like all he can do is watch me suffer, even though he helps me with so many things. He's afraid that the endo will indirectly cause me a premature death, because of compromised immune system, surgeries, or just trying to have kids. He used to say if he won the lottery, he'd pay off both our student loans, get a house, maybe open a gaming place. Now he's saying that he'd just use the money to find a cure. He used to talk about going back to school to become a physicians assistant or a nurse anasthicist. Last night he told me he doesn't think he'll be going back to school, that he's going to stay where he is and this job will make him enough money to support me and any children we may be able to have. He assured me that if we can't conceive, we will use every Avenue to have the family we want with adoption as the last option. He told me he wants me to try to work when I get out of school, but that he doesn't think I'll be able to for long and made sure I understood that it's okay if I end up not being able to. He used to talk about how he wanted to "do more" with his life and with his work. Now he says he just wants to marry me, have a child with me anyway possible, and take care of me. Not that marrying me and having a family wasn't always part of the plan, it was, but now he says that's all he wants. It's like it hit him hard 12 hours ago what my having endometriosis really means. I'm not complaining. It just surprised me how it seemed to suddenly hit him and it's changing his plan and prioreties so much, especially since up until last night he kept telling me to hold out hope that it will get better, than my pain and other symptoms will lessen as if he thought it would get better on its own. I don't know if it's me being so sick right now or what, but his thinking on it has definitely changed suddenly. I'm glad he cares so much, and I'm glad he seems to understand now, but it is sad knowing how my endometriosis is affecting him and making him feel so sad and worried and helpless, knowing something about me is affecting him negatively even though I know it's not really my fault.

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Jul 23

Yeah, I try to describe how it's affecting me before they get to the rating portion. "So bad I can't move" or "feel dizzy," that kind of thing.
Yeah, I've noticed that. After a few days max people are convinced you're lying and just looking for attention or excuse to be "lazy." People also don't understand I was raised to always act like I'm okay no matter what, even if I should really be in the ER, so they often don't believe I feel as horrible as I do or that my pain is as bad because I automatically feel the need to hide it.
I think he pretty much just doesn't bring it up, but it doesn't stop them from doing so. There isn't much else he can do about it. I guess there's a lot of work politics where he's at so he can't afford to say anything about it.

Raine14's picture
Jul 26

No one knew how bad my endo was because I couldn't let anyone see me in that pain, other than my dog. She was a great caretaker. She'd used to pretend she had to go out, and then take me to the kitchen and just look at me until I ate something. But when I was back home, I'd do everything in my room, including eating meals. It wasn't until it got so bad I couldn't hide it anymore that everyone found out, and they still have trouble grasping just how painful it is because I was "fine" for so long.
I've been trying something new recently: letting the people closest to me see how much pain I'm in. So less hiding. And when a wave comes, react, don't just freeze. I'm not sure if it's helping; it's such an ingrained habit that I have a lot of trouble doing it, but it's something.
Poor guy. Tell him I am so sorry he's having to deal with all of that. I hope he has an outlet somewhere, like someone he can just rant to when he gets frustrated with it all.

Jul 26

Exactly. It's tough when it becomes ingrained. It's not like you try to hide it. It's not something you're consciously doing, it's just like an automatic response. It can be helpful when you legitimately have to hide it, but I feel like it's more unhelpful when it's done all the time, because it just makes it so people don't believe you. It's a tough situation.
I know what you mean about the dog. I had an Australian Sheppard for 13 years; he was great. Whenever I got sick, he wouldn't leave my bedside for literally anything.
Thanks. I know he talks to me about it, but I'm not sure he talks to anyone else. I think he mostly feels stuck, like there's just nothing he can do.


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