"5.) Previous attempts at reaching out for help have been rebuffed or ignored, and it hurt so much that you never want to ask again. This one’s really hard. It’s also related to the feeling, as one commenter put it, 'that there’s no help to be had.'"
The "hurt" part is real, but it's also that when this has happened enough times, asking for help just becomes one more thing on the to-do list.
I think a form like this could be incredibly important for caregivers. I was responsible for my mother and then my aunt’s care before they died. While I tried a few times to appeal to family and friends for help, I felt like I wasn’t asking in a way that people responded. If I could have circulated a straightforward list, at least they would have known what I needed and what would have brought some joy to my elders.
My somewhat controversial take is that you should not feel bad if you prefer sucky capitalist alternatives to getting friends to shop for you. Well meaning friends often make strange substitutions while store services/ Instacart tend to ask you. Like “they didn’t have apple sauce so I got apples because it’s super easy to make apple sauce.” Sometimes especially in a chronic illness situation people just don’t *get* limitations.
Such a well synthesized list! Made me sad in how authentic it is. ☹ I think the following applies to everyone generally, but I am saying it from my point of view: as a woman who has worked many years in a very male-dominated, privileged culture.
Social norms + media + power dynamics + the pathology of appearing able to the outside world, (“Easy breezy, it’s so delightful being me! I’m managing it ALL, with pizzazz!”, yah, right!), is a narrative corrosive to building community. To gain traction in our communities, society encourages us to demonstrate a face of ease. This corrosive narrative whispers, “Heaven forbid! Don’t appear weak or needy! Keep up the appearance that you are self-sufficient, so you present as socially (or professionally) attractive, *fun*, buoyant, and unencumbered with life’s shitty realities. To not do so surely means people will shy away from you, from your need, your vulnerability."
The terrible irony is that all most of us want is authentic connection and heartening engagement, which comes through practicing interdependence. How much is lost because of this? How much curiosity and energy and joy and love are diminished because of this nasty whisper?
Doing a list like this and sharing it, is a mighty step to saying "no" to that whisper :-) .
This is so amazing. I want to do this with my husband first, because we totally suffer from trying to do for each other what we want for ourselves. I am an acts of service person, so if he’s struggling, I start doing things like doing his laundry for him (I like to do it, and it feels like an easy thing I can take off his plate). But for a long time, he thought it was me being passive aggressive and telling him he wasn’t doing enough or couldn’t take care of himself. And he loves physical affection, so when I get sick he suddenly gets very cuddly with me, whereas I’m like “ew I feel terrible don’t touch me just make me some soup.”
This is absolutely fantastic!!! For the first time, I have a group of friends- we meet every Sunday for Bloody Marys at a local brewery. We’ve expanded our group here and there, and this, I believe, is something I think there would be real value in! This week, I was on my way to drink solo at the brewery (part research, part not wanting to be home alone while kids were with their dad), and one of the guys messaged me to see of another in our group (who had surgery last month) needed a ride to go vote. She had done the absentee ballot, so she was good. Ten minutes later he showed up at the brewery and we talked and ate and he let me know that he’s usually alone weeknights when he’s not working out of town, so I should let him know when I want to go out and he can meet me so neither of us has to do the stuff alone. It was nice. I’ve been alone so long and haven’t had friends in so long that it never occurred to me to ask someone. I think there are a few in my group who would appreciate the same. I also know several of my group are struggling with different things: one is a caretaker for her father, one just had surgery, some of us have kids, some kids are grown and out of the home already or off at college, etc. I’m imagining that if we knew ways to help without asking the person, that would go a long way towards making our group more of a community. And this would help identify needs. I’m super excited about the prospects and will definitely use this!! Of course, I consider myself one of the neediest 😂
The specific ask is so helpful. A member of our church is caring for her mother also a beloved member of your church. She sent a bunch of people an email with some specific dates and times that she’d like to go out and have a break. People stepped up. So much better than a bunch of saying “I’d be happy to sit with X so you can get a break.”
Here's something I would like to offer in the "mutual aid" space...a $20 credit for whoever can use one as a first time Instacarter. KSTOOPS189EA is the code. If you can see it, you can use it, it's for multiple people.
Instacart has helped me A TON as a disabled, chronically ill woman, and it's the kind of help I actually need—door dropped exacting groceries without interaction. Highly recommend.
For transparency, I also get a $10 credit when someone uses it, and that is helpful to ME. Mutual aid all around!
Thank you for everyone who's worked on this - and especially, AHP, for your work synthesizing, leading the discussion, and then sharing this. We're going to use it, and I'm going to encourage friends who are in the middle of a major medical situation which will result in long-term immune risk, to consider using this as a way to keep those of us in their support network informed and able to help without as much awkwardness.
This piece made me feel comfortable accepting help when it was offered this weekend. And I needed it. (I ran out of gas Saturday (my dad brought me a few gallons in a wee red can) so Sunday when I was driving a friend around she offered to fill my gas tank.) Just a bit short and payday’s Tuesday. So thank you.
I really look forward to the "weeks to come" digital community adaptation mentioned in #6. While I live with my found family--my best friend and their partner--my entire support system beyond them is online and not physically accessible. I feel not just geographically isolated where we live (in my past city-life, I could fill my days with solo exploration) but lonely sometimes in a way that my social network can't fix.
It reminds me of when I was organizing care for my beloved fairy godmother after she'd been released from the hospital after brain surgery. The thing I learned from her is to make a grid: This set of things anyone can do for me / This set of things can be done by people I'm willing to have in my house / This set of things is ONLY for a very small subset of people. Because the person in need should be at the center of power, not the helpers.
I don’t fully know how to put this into words but, as someone who definitely suffers from multiples of the points above, trauma, independence, distrust of friends because of past disappointments, etc., I’m not even sure I would know how to fill out one of these forms. I distinctly remember being on maternity leave with my newborn (nearly 8 years ago) and my mother coming over and doing literally nothing to help me. She had excuses that I won’t go into.
Oddly the people that helped the most felt like strangers. Left us meals.
I am currently doing a meal train for one of my neighbors who is recovering from a cancer treatment. There seems to be safety in the lack of closeness. But I don’t expect the favor to be returned.
I don’t know if it’s that I don’t think I deserve help, I just feel very certain that the answer would be “no.” However much hurt that brings.
"5.) Previous attempts at reaching out for help have been rebuffed or ignored, and it hurt so much that you never want to ask again. This one’s really hard. It’s also related to the feeling, as one commenter put it, 'that there’s no help to be had.'"
The "hurt" part is real, but it's also that when this has happened enough times, asking for help just becomes one more thing on the to-do list.
I think a form like this could be incredibly important for caregivers. I was responsible for my mother and then my aunt’s care before they died. While I tried a few times to appeal to family and friends for help, I felt like I wasn’t asking in a way that people responded. If I could have circulated a straightforward list, at least they would have known what I needed and what would have brought some joy to my elders.
My somewhat controversial take is that you should not feel bad if you prefer sucky capitalist alternatives to getting friends to shop for you. Well meaning friends often make strange substitutions while store services/ Instacart tend to ask you. Like “they didn’t have apple sauce so I got apples because it’s super easy to make apple sauce.” Sometimes especially in a chronic illness situation people just don’t *get* limitations.
This is such a beautiful idea. I wish I had people I could send the form too :'(
Such a well synthesized list! Made me sad in how authentic it is. ☹ I think the following applies to everyone generally, but I am saying it from my point of view: as a woman who has worked many years in a very male-dominated, privileged culture.
Social norms + media + power dynamics + the pathology of appearing able to the outside world, (“Easy breezy, it’s so delightful being me! I’m managing it ALL, with pizzazz!”, yah, right!), is a narrative corrosive to building community. To gain traction in our communities, society encourages us to demonstrate a face of ease. This corrosive narrative whispers, “Heaven forbid! Don’t appear weak or needy! Keep up the appearance that you are self-sufficient, so you present as socially (or professionally) attractive, *fun*, buoyant, and unencumbered with life’s shitty realities. To not do so surely means people will shy away from you, from your need, your vulnerability."
The terrible irony is that all most of us want is authentic connection and heartening engagement, which comes through practicing interdependence. How much is lost because of this? How much curiosity and energy and joy and love are diminished because of this nasty whisper?
Doing a list like this and sharing it, is a mighty step to saying "no" to that whisper :-) .
This is so amazing. I want to do this with my husband first, because we totally suffer from trying to do for each other what we want for ourselves. I am an acts of service person, so if he’s struggling, I start doing things like doing his laundry for him (I like to do it, and it feels like an easy thing I can take off his plate). But for a long time, he thought it was me being passive aggressive and telling him he wasn’t doing enough or couldn’t take care of himself. And he loves physical affection, so when I get sick he suddenly gets very cuddly with me, whereas I’m like “ew I feel terrible don’t touch me just make me some soup.”
This is absolutely fantastic!!! For the first time, I have a group of friends- we meet every Sunday for Bloody Marys at a local brewery. We’ve expanded our group here and there, and this, I believe, is something I think there would be real value in! This week, I was on my way to drink solo at the brewery (part research, part not wanting to be home alone while kids were with their dad), and one of the guys messaged me to see of another in our group (who had surgery last month) needed a ride to go vote. She had done the absentee ballot, so she was good. Ten minutes later he showed up at the brewery and we talked and ate and he let me know that he’s usually alone weeknights when he’s not working out of town, so I should let him know when I want to go out and he can meet me so neither of us has to do the stuff alone. It was nice. I’ve been alone so long and haven’t had friends in so long that it never occurred to me to ask someone. I think there are a few in my group who would appreciate the same. I also know several of my group are struggling with different things: one is a caretaker for her father, one just had surgery, some of us have kids, some kids are grown and out of the home already or off at college, etc. I’m imagining that if we knew ways to help without asking the person, that would go a long way towards making our group more of a community. And this would help identify needs. I’m super excited about the prospects and will definitely use this!! Of course, I consider myself one of the neediest 😂
The specific ask is so helpful. A member of our church is caring for her mother also a beloved member of your church. She sent a bunch of people an email with some specific dates and times that she’d like to go out and have a break. People stepped up. So much better than a bunch of saying “I’d be happy to sit with X so you can get a break.”
I love the form!
Here's something I would like to offer in the "mutual aid" space...a $20 credit for whoever can use one as a first time Instacarter. KSTOOPS189EA is the code. If you can see it, you can use it, it's for multiple people.
Instacart has helped me A TON as a disabled, chronically ill woman, and it's the kind of help I actually need—door dropped exacting groceries without interaction. Highly recommend.
For transparency, I also get a $10 credit when someone uses it, and that is helpful to ME. Mutual aid all around!
Thank you for everyone who's worked on this - and especially, AHP, for your work synthesizing, leading the discussion, and then sharing this. We're going to use it, and I'm going to encourage friends who are in the middle of a major medical situation which will result in long-term immune risk, to consider using this as a way to keep those of us in their support network informed and able to help without as much awkwardness.
Thank you for this, Anne Helen Petersen! What a gift to find it in my email this morning. I am excited to put this into action.
This piece made me feel comfortable accepting help when it was offered this weekend. And I needed it. (I ran out of gas Saturday (my dad brought me a few gallons in a wee red can) so Sunday when I was driving a friend around she offered to fill my gas tank.) Just a bit short and payday’s Tuesday. So thank you.
I really look forward to the "weeks to come" digital community adaptation mentioned in #6. While I live with my found family--my best friend and their partner--my entire support system beyond them is online and not physically accessible. I feel not just geographically isolated where we live (in my past city-life, I could fill my days with solo exploration) but lonely sometimes in a way that my social network can't fix.
Thanks for all of this.
It reminds me of when I was organizing care for my beloved fairy godmother after she'd been released from the hospital after brain surgery. The thing I learned from her is to make a grid: This set of things anyone can do for me / This set of things can be done by people I'm willing to have in my house / This set of things is ONLY for a very small subset of people. Because the person in need should be at the center of power, not the helpers.
I don’t fully know how to put this into words but, as someone who definitely suffers from multiples of the points above, trauma, independence, distrust of friends because of past disappointments, etc., I’m not even sure I would know how to fill out one of these forms. I distinctly remember being on maternity leave with my newborn (nearly 8 years ago) and my mother coming over and doing literally nothing to help me. She had excuses that I won’t go into.
Oddly the people that helped the most felt like strangers. Left us meals.
I am currently doing a meal train for one of my neighbors who is recovering from a cancer treatment. There seems to be safety in the lack of closeness. But I don’t expect the favor to be returned.
I don’t know if it’s that I don’t think I deserve help, I just feel very certain that the answer would be “no.” However much hurt that brings.
This is so helpful! Thank you for putting it together.