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The original was posted on /r/ehlersdanlos by /u/candelaintampa on 2023-10-05 05:50:17.
TW: MENTION OF SEXUAL ASSAULT
I finally got real with my mom about my health issues Monday. She guilt tripped me for always shutting her out, so I went out of my comfort zone and really opened up. She responded by leaning into her denial, telling me I need to look more into what’s going on, I can’t just accept the health issues I’m having, etc., etc. She refuses to accept when I say that it’s not just an issue that can be magically fixed.
Today I hurt myself SI joint. I was having a panic attack and pacing more than I should have. My adrenal and sex hormones have been allllll over the place, so it’s been hard to manage my emotions. My kids are having a sleepover with her, and I appreciate her help. But I called her to update her and she told me she had been on the phone with my sister because I’ve been having a lot of “incidents” lately. It was a weird comment.
I sent her a response with a screenshot of common EDS issues, and a message that said, “in case you want to understand more about hEDS and my incidents❤️” of course, she’s not going to read it, but I already had to explain my condition to the triage nurse at the ER, and didn’t care to do it again.
I’m mostly annoyed because:
- Why is she talking to my sister about my health issues and not me if she is confused? My sister has no health issues and rarely talks to me, so what input does she have?
- She doesn’t take the time to even understand my health issues before making judgments about them.
- Mostly, because she acts like I’m just throwing up my hands and giving up because I’m trying to get to a healthy state of acceptance that I am just not going to have the same life as every other 29 year old.
It’s already agonizing that I can’t be the mother I want to my little girls because I’m always exhausted and in pain. I’m grieving what I thought my life would be like at this age every day. I cry about it almost daily. I thought the pain, the injuries, the exhaustion was just accident-related, then pregnancy-related, then post-partum related, then thyroid-related, and kept thinking that there was some end point where I would magically feel better. But the okay feelings have been few and far between recently and I feel so alone with all of this.
I’m not throwing up my hands and giving up. I see pain mgt, an integrative med doctor, and Dr. Trevino (a local EDS specialist). I’ve been in therapy since April 2022 and to an IOP for severe depression (5 hours of therapy, 5x/week.) I tried the Muldowney method in PT (but stopped PT because I was sexually assaulted during a massage last year, so that’s a very triggering setting). I’ve ready books upon books of how to manage my health and my mindset. Like IM REALLY FUCKING TRYING. I wish I could communicate this to my mom in a way where she would listen. I wish I had the kind of mom who would listen. Joke is on me for thinking this time, being vulnerable with her would be different.
Okay, if you’re still here, thank you for coming to my pity party.
Goodnight, Reddit.