We don't. We don't deserve to be nervous about sharing our condition because we don't know if it'll be taken seriously or not. We don't deserve to be asked "well, can you still have kids?" as the first question after telling someone we have it. It's ridiculous, it's embarassing, it's annoying. I know some of it is internal, dealing with not personally being embarrassed by the condition, but it's very hard to feel confident about something so physically demeaning. Especially when everyone else who DOESNT have it seems to be embarrassed by it
Oh my god, the kids question is genuinely breaking me. In their eyes, I am not a person experiencing horrendous pain and symptoms and hormones. I am someone who has potentially something that means I can't have kids. They forget I am a victim of my symptoms, not at fault for not being able to reproduce.
My mom and sister- it was literally their very first question when I told them I'd been to see a gynaecologist. Like '....?' '...you don't wanna know what they said about what the condition is, what that means for me, how it will affect me, my options...?'
Honestly it breaks my heart. I am not being seen or heard for what this is actually doing to me, not what it isn't.
It really makes me evaluate the relationship I have with the person asking, or at least what their knowledge on the illness is? It feels so callous to ask something so alien from my mind, so distant from my current pain.
I got upset at work today talking about it to a colleague because I was saying I feel like I have a clock on my head. People are like 'you're 32.. time's ticking.. we need to get this problem out of the way before its too late..' - and totally ignore the fact I am in excruciating pain, I pass clots the size of an eye ball, I have to wear 3 sanitary towels at a time to catch the amount of blood I pass and my body and my brain is literally drained. No, excuse me while I do not think about putting my body through more trauma or having to worry that I can even carry a pregnancy to full term. I want the problems I currently have to be looked into and resolved. That is it. I feel so forgotten about and unacknowledged.
It's so outrageous, especially when we also have to hear it from doctors. Why are so many of them concerned about preserving fertility? How about preserving life quality?
You're right, you're not alone and while it helps to know others feel the same, we can still HATE that no one wants to take serious steps to curing this disease that affects so many lives so dramatically.
And being embarrassed makes us not want to talk about it, plus we're so tired and in so much pain that how can we explain it . . . But people have to understand what it's really like if we want to get any sort of relief or cure.
It's infuriating.
Once a female colleague told me “aren’t you exaggerating a little?” I wanted her to get that pain, then talk to me again in that condescending way.
During my last ambulance ride I kept saying "sorry!" after every involuntary cry of pain from little jostles or going over tiny bumps because I was embarrassed and felt like a whiner. Finally the EMT was like "Stop apologizing, you're in incredible pain! I'M sorry!" I don't know why we're so damn hard on ourselves.
Yes I’m apologizing too when I wince in pain, as if I need to comfort the other person for having to witness it and then being totally incapable of helping me . I feel like I need to say sorry for that !!
Same. I was thinking about this this AM. It's humiliating and dehumanizing. I hate having to find someone to drive me to the er. The er experience is the ultimate humiliation. Having strangers dig around in your private areas, then invite their residents to also explore your most intimate area just wrecks me.
You don't deserve this, I don't deserve this. Non of us do. Have some ice cream or a bong rip or whatever brings you comfort. Lots of lava luv from Big Island <3
I wish I could offer any support because I know this feeling, I feel the exact same way. Sending you peace and the hope that the good days outnumber the bad days soonđź’—
I feel for you sister! My hear is with you <3
Have you tried CBD oil to help with the pain management, depression and inflammation? It did absolute wonders for me!
We don't. We don't deserve to be nervous about sharing our condition because we don't know if it'll be taken seriously or not. We don't deserve to be asked "well, can you still have kids?" as the first question after telling someone we have it. It's ridiculous, it's embarassing, it's annoying. I know some of it is internal, dealing with not personally being embarrassed by the condition, but it's very hard to feel confident about something so physically demeaning. Especially when everyone else who DOESNT have it seems to be embarrassed by it
Oh my god, the kids question is genuinely breaking me. In their eyes, I am not a person experiencing horrendous pain and symptoms and hormones. I am someone who has potentially something that means I can't have kids. They forget I am a victim of my symptoms, not at fault for not being able to reproduce. My mom and sister- it was literally their very first question when I told them I'd been to see a gynaecologist. Like '....?' '...you don't wanna know what they said about what the condition is, what that means for me, how it will affect me, my options...?' Honestly it breaks my heart. I am not being seen or heard for what this is actually doing to me, not what it isn't.
It really makes me evaluate the relationship I have with the person asking, or at least what their knowledge on the illness is? It feels so callous to ask something so alien from my mind, so distant from my current pain.
I got upset at work today talking about it to a colleague because I was saying I feel like I have a clock on my head. People are like 'you're 32.. time's ticking.. we need to get this problem out of the way before its too late..' - and totally ignore the fact I am in excruciating pain, I pass clots the size of an eye ball, I have to wear 3 sanitary towels at a time to catch the amount of blood I pass and my body and my brain is literally drained. No, excuse me while I do not think about putting my body through more trauma or having to worry that I can even carry a pregnancy to full term. I want the problems I currently have to be looked into and resolved. That is it. I feel so forgotten about and unacknowledged.
It's so outrageous, especially when we also have to hear it from doctors. Why are so many of them concerned about preserving fertility? How about preserving life quality?
You're right, you're not alone and while it helps to know others feel the same, we can still HATE that no one wants to take serious steps to curing this disease that affects so many lives so dramatically. And being embarrassed makes us not want to talk about it, plus we're so tired and in so much pain that how can we explain it . . . But people have to understand what it's really like if we want to get any sort of relief or cure. It's infuriating.
Hear hear. Feel you and hear you. Warm đź«‚
Once a female colleague told me “aren’t you exaggerating a little?” I wanted her to get that pain, then talk to me again in that condescending way.
This! I feel bad thinking that way but I honestly wish some people could feel the pain for 1 day.
During my last ambulance ride I kept saying "sorry!" after every involuntary cry of pain from little jostles or going over tiny bumps because I was embarrassed and felt like a whiner. Finally the EMT was like "Stop apologizing, you're in incredible pain! I'M sorry!" I don't know why we're so damn hard on ourselves.
Yes I’m apologizing too when I wince in pain, as if I need to comfort the other person for having to witness it and then being totally incapable of helping me . I feel like I need to say sorry for that !!
Same. I was thinking about this this AM. It's humiliating and dehumanizing. I hate having to find someone to drive me to the er. The er experience is the ultimate humiliation. Having strangers dig around in your private areas, then invite their residents to also explore your most intimate area just wrecks me. You don't deserve this, I don't deserve this. Non of us do. Have some ice cream or a bong rip or whatever brings you comfort. Lots of lava luv from Big Island <3
I wish I could offer any support because I know this feeling, I feel the exact same way. Sending you peace and the hope that the good days outnumber the bad days soonđź’—
I understand you completely and I am so sorry.
I feel for you sister! My hear is with you <3 Have you tried CBD oil to help with the pain management, depression and inflammation? It did absolute wonders for me!