"Yeah I just feel like if it's that debilitating it's not a great way to live your life. Sounds really limiting and a lot on Jon.”
What?! Like WTAF...
It's not a fricking lifestyle choice! *Shaking my head*
The feeling like you need to explain or justify, what is essentially your existence infuriates me. I'm frustrated on your behalf and I am right there with you in solidarity to working as hard as we can, with what we have in our capacity to do.
100% be kind to your self.
My therapist said, truth is if you don't take care of you, you'll be no use to anyone. - this might sound blunt out of context but I, like you, have shame and guilt about all things I used to be able to do, all things I 'should' be able to do and of course want to do but ultimately I'm just not capable at the moment and only by giving myself some love and compassion can I ever hope to build back up to functional again. And I'd be happy with that.
I don't need to be amazing, I'd just like to be stable to be honest 🙃
Thank you for reading and including my post here 🫶🏻
Thank you, Casper! 🧡 I really believe that this friend meant well, and thought the solution was fairly straightforward and just wants me to feel better so things will be easier. But it is frustrating because it's much more complicated than that for me, and it's difficult to explain why, even when I'd like to.
I think I've gotten really good at advocating for myself medically but I've realized in many ways I'm still asking for the bare minimum from my husband because I already feel like he's doing "too much" so I need to work on that. Unfortunately, this conversation brought up that shame, but I also think that noticing it has helped me realize how much I need to start unpacking it.
It is incredibly hard to advocate for oneself, especially when, if you're like me, you still feel doubt or a lack of confidence in 'what I know' or more specifically 'what I need'.
Its hard to feel like you are a burden, even when you are not but let him tell you when it's too much for him and perhaps having that conversation where you communicate your needs and he has a place to do the same will be positive for both you. Hard yes, probably uncomfortable but it will be worth it. When you both know its coming from a place of love and wanting the best for each other, there's nothing you can say thats wrong. Having had to have this conversation, you'll be surprised how much work and energy you're putting in to NOT having it or how much you do and don't ask for (and all the guilt and shame in that) - that energy can be freed up and directed where it needs to go 😌
Asking for help, in any way, does not come naturally to me - I've always been the helper and perfectionism doesn't help... but we all need help sometimes.
It doesn't help that my husband struggles with sharing his own needs. While I am often more clear on mine, he won't always tell me when things are too much, so that's something we have to work on together as well. We definitely do need to have a good talk about it, though. I appreciate you sharing your experience with it. I do think I waste a lot of energy on *not* saying things.
I understand - I'm better in writing (partly why i'm here) so sometimes have to Whatsapp my partner and we discuss things that way, perhaps writing it down might help him and then help with reflecting or referring back to it too? - just a suggestion, feel free to throw it right out the window though 😂
good luck with any and all of it though - 'it will all be hard till it isn't' as i like to say 🙂
So vulnerably beautiful, A. And I can relate to feeling shame around suffering you didn't ask for and that's causing stress not only on yourself but those around you. I wish this world was set up to be more accommodating to those of us who need it.
I’m so sorry you have to manage this. But I’m grateful you are sharing because it helps me remember that a lot goes on that I can’t see in other people. This is an important reminder.
Thank you for sharing; it is so difficult when one has an "invisible disease" especially those which aren't well known. My daughter is struggling with getting a diagnosis of POTS (which is what she suspects) but the one med she tried was just impossible for her to stay on.
The frustration you experience with your husband having to burn PTO time is so infuriating. Why are workplaces like that? Mine is fortunate enough to work from home but if a person is getting their job done, why nickel and dime their time that they need to help those in their family just live day to day!?!?! Our society has such a ridiculous price they put on productivity.
Productivity at the expense of everything else feels like one of the hallmarks of our society, doesn't it? I absolutely don't understand how employers could possibly expect loyalty or good work from undervalued employees.
I hope your daughter can find the support she needs! I had to see a cardiologist to get diagnosed with POTS, and my next step would have been a neurologist if he hadn't been so helpful.
Thank you. We were in the middle of changing cardiologists and had an insurance issue come up. It’s so hard because they treat her like a silly little girl who does not know what she’s talking about. (She’s 20)
I feel like that happens so often. I've gotten pretty lucky with health care providers who generally believe me when I come to them with strong suspicions, but I also had to catch a lot of the major ones myself first, including the POTS.
Thank you for sharing your experience and making the invisible visible! As a fellow POTSie, I’m sending you a giant virtual hug . . . like a big, fuzzy compression sock for the soul. (But don’t worry, if I am ever lucky enough to meet you in person, I won’t assume you want an actual hug unless you say so!)
Thank you, Lisa! 😊 I usually enjoy hugs from people I'm comfortable with, so I'd be happy to accept one from you. (And I appreciate you checking, even hypothetically!)
Thanks for your courage and vulnerability and truth-telling. Never have truer words been written: "many experiences of struggling to meet social expectations of functioning and productivity are seen as moral or personal failings rather than the disability they are." So many folks live with invisible disabilities, but whether one's disability is visible or not, and regardless of whether it is categorized by society as "legitimate" or not, disabled folks are constantly living under the shadow of judgment and othering and have all sorts of shaming hoops to jump through to get even a baseline of accommodation or support (in most cases). The self-advocacy and self-acceptance required of disabled folks to carry on are truly superpowers.
"Yeah I just feel like if it's that debilitating it's not a great way to live your life. Sounds really limiting and a lot on Jon.”
What?! Like WTAF...
It's not a fricking lifestyle choice! *Shaking my head*
The feeling like you need to explain or justify, what is essentially your existence infuriates me. I'm frustrated on your behalf and I am right there with you in solidarity to working as hard as we can, with what we have in our capacity to do.
100% be kind to your self.
My therapist said, truth is if you don't take care of you, you'll be no use to anyone. - this might sound blunt out of context but I, like you, have shame and guilt about all things I used to be able to do, all things I 'should' be able to do and of course want to do but ultimately I'm just not capable at the moment and only by giving myself some love and compassion can I ever hope to build back up to functional again. And I'd be happy with that.
I don't need to be amazing, I'd just like to be stable to be honest 🙃
Thank you for reading and including my post here 🫶🏻
Thank you, Casper! 🧡 I really believe that this friend meant well, and thought the solution was fairly straightforward and just wants me to feel better so things will be easier. But it is frustrating because it's much more complicated than that for me, and it's difficult to explain why, even when I'd like to.
I think I've gotten really good at advocating for myself medically but I've realized in many ways I'm still asking for the bare minimum from my husband because I already feel like he's doing "too much" so I need to work on that. Unfortunately, this conversation brought up that shame, but I also think that noticing it has helped me realize how much I need to start unpacking it.
Well i'm still mad at them 😝
It is incredibly hard to advocate for oneself, especially when, if you're like me, you still feel doubt or a lack of confidence in 'what I know' or more specifically 'what I need'.
Its hard to feel like you are a burden, even when you are not but let him tell you when it's too much for him and perhaps having that conversation where you communicate your needs and he has a place to do the same will be positive for both you. Hard yes, probably uncomfortable but it will be worth it. When you both know its coming from a place of love and wanting the best for each other, there's nothing you can say thats wrong. Having had to have this conversation, you'll be surprised how much work and energy you're putting in to NOT having it or how much you do and don't ask for (and all the guilt and shame in that) - that energy can be freed up and directed where it needs to go 😌
Asking for help, in any way, does not come naturally to me - I've always been the helper and perfectionism doesn't help... but we all need help sometimes.
It doesn't help that my husband struggles with sharing his own needs. While I am often more clear on mine, he won't always tell me when things are too much, so that's something we have to work on together as well. We definitely do need to have a good talk about it, though. I appreciate you sharing your experience with it. I do think I waste a lot of energy on *not* saying things.
I understand - I'm better in writing (partly why i'm here) so sometimes have to Whatsapp my partner and we discuss things that way, perhaps writing it down might help him and then help with reflecting or referring back to it too? - just a suggestion, feel free to throw it right out the window though 😂
good luck with any and all of it though - 'it will all be hard till it isn't' as i like to say 🙂
I'm the same! I'll have to ask him if that would feel helpful for him as well. Thank you again!
So vulnerably beautiful, A. And I can relate to feeling shame around suffering you didn't ask for and that's causing stress not only on yourself but those around you. I wish this world was set up to be more accommodating to those of us who need it.
Thank you, Ashleigh! I wish it were, too. 🧡
I’m so sorry you have to manage this. But I’m grateful you are sharing because it helps me remember that a lot goes on that I can’t see in other people. This is an important reminder.
Thank you so much, Kim. I appreciate you reading and your willingness to pay attention. We all need reminders sometimes.
We do! And I love when a writer (in this case you) expands my understanding of the world. Thank you!!!
That's so kind of you to say. Your writing has done the same for me!
I loved this so much.
Thank you for sharing; it is so difficult when one has an "invisible disease" especially those which aren't well known. My daughter is struggling with getting a diagnosis of POTS (which is what she suspects) but the one med she tried was just impossible for her to stay on.
The frustration you experience with your husband having to burn PTO time is so infuriating. Why are workplaces like that? Mine is fortunate enough to work from home but if a person is getting their job done, why nickel and dime their time that they need to help those in their family just live day to day!?!?! Our society has such a ridiculous price they put on productivity.
Productivity at the expense of everything else feels like one of the hallmarks of our society, doesn't it? I absolutely don't understand how employers could possibly expect loyalty or good work from undervalued employees.
I hope your daughter can find the support she needs! I had to see a cardiologist to get diagnosed with POTS, and my next step would have been a neurologist if he hadn't been so helpful.
Thank you. We were in the middle of changing cardiologists and had an insurance issue come up. It’s so hard because they treat her like a silly little girl who does not know what she’s talking about. (She’s 20)
I feel like that happens so often. I've gotten pretty lucky with health care providers who generally believe me when I come to them with strong suspicions, but I also had to catch a lot of the major ones myself first, including the POTS.
Thank you for sharing your experience and making the invisible visible! As a fellow POTSie, I’m sending you a giant virtual hug . . . like a big, fuzzy compression sock for the soul. (But don’t worry, if I am ever lucky enough to meet you in person, I won’t assume you want an actual hug unless you say so!)
Thank you, Lisa! 😊 I usually enjoy hugs from people I'm comfortable with, so I'd be happy to accept one from you. (And I appreciate you checking, even hypothetically!)
Thanks for your courage and vulnerability and truth-telling. Never have truer words been written: "many experiences of struggling to meet social expectations of functioning and productivity are seen as moral or personal failings rather than the disability they are." So many folks live with invisible disabilities, but whether one's disability is visible or not, and regardless of whether it is categorized by society as "legitimate" or not, disabled folks are constantly living under the shadow of judgment and othering and have all sorts of shaming hoops to jump through to get even a baseline of accommodation or support (in most cases). The self-advocacy and self-acceptance required of disabled folks to carry on are truly superpowers.
Thank you for reading, Keith! I often think the acceptance is harder than the advocacy, but we're working on it😅