This post brings (good) tears to my eyes, simply for everyone taking a moment to really *see* the people and community around us.
As a “young” person with an invisible chronic illness (have lost count how many doctors have told me “you’re too young to have any risk factors”), and as someone living with my retirement-age parents (and yes, I’m on the first line of defense in dealing with Amazon issues for them and for older aunts), I’m right in this intersection.
Before these articles/comments, I hadn’t really noticed the tension between our interdependence and our expectations of eternal independence -- despite the ways that my parents help me in my disability (transportation, doctor appointment help, among other things) and the ways I help my parents (Amazon and making difficult phone calls, et al.). There’s often some sense of apology underlying our “burdenliness” on each other.
The amazing power of taking a moment to *see* the normalcy of it all (in the here and now as Elizabeth pointed out) is evident in the deep sense of gratitude welling up in me right now. Both for the ways I am helped and the ways I am allowed to help.
Thank you for this! There definitely is this rejoicing in my heart whenever someone outside the chronic illness community even vaguely refers to these issues yet alone explores them more deeply.
My spiritual director (who struggles with chronic pain but is in a very different position as an older religious sister) has been working with me on surrender and detachment, and I'm realizing reading your comment just how intrinsically linked my struggles with detachment and resisting help from my parents or at other times getting incredibly frustrated when they won't help, that whole issue of dependence impacts my reflections on spiritual poverty and detachment sooo much!
Which is not to imply that we begrudge each other the interdependence, but that we often each feel an internal expectation that we shouldn’t need help. That needing help is a lack of being responsible for oneself: in some way failing the others in our lives who are counting on us to be responsible for ourselves.
yes! my parents are in their 70s but because Dad isn't retired yet and Mom is still incredibly active despite glaucoma, somehow I frequently end up being the one with a sense of failing/being overly dependent. Mom also struggles with a sense of failure but largely because of my illness not because she is dependent one in any way.
Ooh! This, too -- “Mom also struggles with a sense of failure but largely because of my illness” -- so so true. Seeing illness in our loved ones as a failure. I’ve seen this in my mom as well.
I really appreciate your bringing this topic up. While I value the comments others have made regarding the need to pay attention to the elderly in our midst, I wanted to call attention to those of us of working age (especially in our 20s, 30s and 40s) who are chronically ill, disabled and/or housebound. I was diagnosed with ME (myalgic encephalomyelitis) and subsequently with a whole list of other diagnoses in my 30s right after grad school. My experience especially as a Catholic convert has been that everything (from getting communion to be brought to me at home, to getting approved for para-transit) has been harder because of being single and relatively young.
And when I try to talk about these issues outside of the chronic illness community, including in Catholic spaces, it is rather like shouting into the void. This is true on Twitter, on Facebook, even talking to members of my parish community. It's hard even to get my relatively young parish priest to listen. My concern is only growing because of the likelihood of the physically disabled population growing significantly over the next few months because of long covid patients. How can our needs be addressed when members of our faith community, and healthy friends and family and former colleagues, aren't even willing to listen?
I also want to add that for me, the healthcare world is the arena in which I have felt most invisible. I never feel more ignored and unseen than when I am speaking with the majority of doctors and healthcare professionals.
For the record, I have also had a trusted handful of health professionals who *do* see me, and their “seeing” of me has been exponentially more powerful than the “unseeing” of each other health professional.
Having experienced both sides, and having watched those trusted professionals wrestle through their moments of unseeing, too, I’ve thought a lot about the underlying factors. Shame, fear/overwhelm (a sense of “I wasn’t trained for this, so it shouldn’t be my job to see these things”), to begin with. I hadn’t thought until now about the sense of failure that comes with someone in our care losing their health, and I can see this being a strong one also.
There’s also a well-documented discrepancy between how *seen* men are and how *unseen* women are. I remember one flare episode in particular that manifested in heart palpitations: an older friend of mine (who had been a nurse in her younger years) found it interesting that her son-in-law was having the exact same issues at the same time I was . . . but where I was being handed a book to read on how the brain creates our symptoms, he was being given a heart monitor. My friend said to me, “I’m pretty sure if you were a man, you’d have been given different treatment.” Her comment surprised me bcs at the time, I hadn’t even thought of gender disparity as a possibility. And also because she would never have classified herself as feminist (she identified as more of a Phyllis Schlafly woman). To be honest, this factor is still the hardest for me to bring up. It somehow feels shameful to bring up — I feel a slight sense of embarrassment for those with the blind spot, as well as a sense of embarrassment for pointing it out (that same kind of feeling you get when you have to tell someone their fly is open, lol!), plus a sense of embarrassment for being a whiney woman!
Have you read any of Maya Dusenberry's work? It definitely ties in to your point about differences in male/female care. Although truthfully I'm a bit reluctant to go there as one of the worst examples of involuntary commitment to a psych ward I saw of an ME patient was of Thane Black Frederickson.
Maya and her sister Lisa not only do amazing work, but they spent months caregiving for a dear friend with severe ME and mast cell disease. So truly living what they preach! (Sadly that friend Heather Colman-McGill subsequently passed away, but I am so grateful for the time she had because of the Dusenberrys)
Yes, I’m also a person with ME and have had similar invisibility issues and similar concerns for the newest cohort joining our ranks due to long covid. Thank you for mentioning this huge sector of invisibility (at least 1 million in the US before covid, now at least 7 million more!). The history of “unseeing” this illness just blows me away every time I reread about it -- here’s a good primer for anyone interested in the invisibility of this particular illness: Jen Brea’s TED talk on hers https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
Yes, we do this work as caregivers for elders, but this is a two way street.
What happens when the elders refuse to recognize the limitations of aging or refuse to recognize that they are aging and should plan for their future?
The younger relatives intervene and say something, but they refuse to listen. What next? Sue for guardianship? Have them declared incompetent? Deal with it as you can as they descend into whatever they are dealing with? They can create unnecessary hardships with their angers, resentments and refusal to deal.
What if they refuse to defer to the younger relatives who are more capapable? Or when the elderly person neglects their own health to the extent that caregiving at home is more and more of a challenge, regardless of how many children and grandchildren might be aroung to help?
Are they willing to reflect on that and recognize that for those ten years prior, assisted living might have helped, or that nursing home care might work for the last few years?
I have definitely experienced this myself--I was in a really strange and sad situation last year when my elderly downstairs neighbor suddenly lost his ability to walk more than short distances. He started asking me to go to the store for him and quickly escalated to stranger and stranger requests--that I take his debit card and withdraw cash, that I bring him extra blankets while his windows were wide open in the snow, that I deliver a letter which I mistakenly opened and realized from the contents that he had been scammed for a large sum of money. I eventually strongarmed him into allowing a crisis team into his apartment, and I believe he was sectioned and taken to a nursing home against his will in the end. It was for the best, especially as they later told me that he was severely dehydrated and might have died soon otherwise. But it hurt so much, and unfairly so, to see his sadness and dismay at being taken away. I still feel angry at the younger version of himself who neglected to plan for his care in old age or acknowledge his eventual frailty.
Yes, these types of stories are so poignant. I'm so glad you were there for your neighbor, but it's unfortunate it had to come to that. In the cases I'm thinking of, they had more than enough knowledge and information to do what had to be done and plan, but an absolute refusal to recognize and follow up was the strategy. It's so easy to fall into a rut of complacency not realizing that the clock is ticking on us all.
I was reminded of this discussion again when I read Peterson's article "Forced to Care": https://annehelen.substack.com/p/forced-to-care?s=r . It centers a little more on the perspective of the caregivers rather than those who need care, and I think it's a good complimentary read!
Yeah, though the one thing that gives me some pause about the article is that on a personal level, I'm not sure that the "coerced" = "unchosen" = "bad" is always a great framing. Unchosen obligations aren't always bad and can be character shaping and life-affirming, and sometimes what we want isn't what we need. I think this could be framed better by looking at care work through a framework of unnecessary suffering vs necessary suffering (e.g. even in a much better world, a couple probably can't have two careers if they have a severely disabled child, but in that world they would have access to respite care, whatever necessary medical treatments, etc.).
This post brings (good) tears to my eyes, simply for everyone taking a moment to really *see* the people and community around us.
As a “young” person with an invisible chronic illness (have lost count how many doctors have told me “you’re too young to have any risk factors”), and as someone living with my retirement-age parents (and yes, I’m on the first line of defense in dealing with Amazon issues for them and for older aunts), I’m right in this intersection.
Before these articles/comments, I hadn’t really noticed the tension between our interdependence and our expectations of eternal independence -- despite the ways that my parents help me in my disability (transportation, doctor appointment help, among other things) and the ways I help my parents (Amazon and making difficult phone calls, et al.). There’s often some sense of apology underlying our “burdenliness” on each other.
The amazing power of taking a moment to *see* the normalcy of it all (in the here and now as Elizabeth pointed out) is evident in the deep sense of gratitude welling up in me right now. Both for the ways I am helped and the ways I am allowed to help.
Thank you for this! There definitely is this rejoicing in my heart whenever someone outside the chronic illness community even vaguely refers to these issues yet alone explores them more deeply.
My spiritual director (who struggles with chronic pain but is in a very different position as an older religious sister) has been working with me on surrender and detachment, and I'm realizing reading your comment just how intrinsically linked my struggles with detachment and resisting help from my parents or at other times getting incredibly frustrated when they won't help, that whole issue of dependence impacts my reflections on spiritual poverty and detachment sooo much!
Which is not to imply that we begrudge each other the interdependence, but that we often each feel an internal expectation that we shouldn’t need help. That needing help is a lack of being responsible for oneself: in some way failing the others in our lives who are counting on us to be responsible for ourselves.
yes! my parents are in their 70s but because Dad isn't retired yet and Mom is still incredibly active despite glaucoma, somehow I frequently end up being the one with a sense of failing/being overly dependent. Mom also struggles with a sense of failure but largely because of my illness not because she is dependent one in any way.
Ooh! This, too -- “Mom also struggles with a sense of failure but largely because of my illness” -- so so true. Seeing illness in our loved ones as a failure. I’ve seen this in my mom as well.
Thank you so much for pointing this out!
Really loved Jordan's comment. I watched my parents do all of this for my grandparents, but didn't have the words for it.
This is one of my favorite Other Feminisms posts so far. Beautiful and contemplative.
This is the blessing of a good commentariat!
I really appreciate your bringing this topic up. While I value the comments others have made regarding the need to pay attention to the elderly in our midst, I wanted to call attention to those of us of working age (especially in our 20s, 30s and 40s) who are chronically ill, disabled and/or housebound. I was diagnosed with ME (myalgic encephalomyelitis) and subsequently with a whole list of other diagnoses in my 30s right after grad school. My experience especially as a Catholic convert has been that everything (from getting communion to be brought to me at home, to getting approved for para-transit) has been harder because of being single and relatively young.
And when I try to talk about these issues outside of the chronic illness community, including in Catholic spaces, it is rather like shouting into the void. This is true on Twitter, on Facebook, even talking to members of my parish community. It's hard even to get my relatively young parish priest to listen. My concern is only growing because of the likelihood of the physically disabled population growing significantly over the next few months because of long covid patients. How can our needs be addressed when members of our faith community, and healthy friends and family and former colleagues, aren't even willing to listen?
I also want to add that for me, the healthcare world is the arena in which I have felt most invisible. I never feel more ignored and unseen than when I am speaking with the majority of doctors and healthcare professionals.
For the record, I have also had a trusted handful of health professionals who *do* see me, and their “seeing” of me has been exponentially more powerful than the “unseeing” of each other health professional.
Having experienced both sides, and having watched those trusted professionals wrestle through their moments of unseeing, too, I’ve thought a lot about the underlying factors. Shame, fear/overwhelm (a sense of “I wasn’t trained for this, so it shouldn’t be my job to see these things”), to begin with. I hadn’t thought until now about the sense of failure that comes with someone in our care losing their health, and I can see this being a strong one also.
There’s also a well-documented discrepancy between how *seen* men are and how *unseen* women are. I remember one flare episode in particular that manifested in heart palpitations: an older friend of mine (who had been a nurse in her younger years) found it interesting that her son-in-law was having the exact same issues at the same time I was . . . but where I was being handed a book to read on how the brain creates our symptoms, he was being given a heart monitor. My friend said to me, “I’m pretty sure if you were a man, you’d have been given different treatment.” Her comment surprised me bcs at the time, I hadn’t even thought of gender disparity as a possibility. And also because she would never have classified herself as feminist (she identified as more of a Phyllis Schlafly woman). To be honest, this factor is still the hardest for me to bring up. It somehow feels shameful to bring up — I feel a slight sense of embarrassment for those with the blind spot, as well as a sense of embarrassment for pointing it out (that same kind of feeling you get when you have to tell someone their fly is open, lol!), plus a sense of embarrassment for being a whiney woman!
Finally, there’s the way that we tend to view illness/incapacity as a moral/intellectual failing on the part of the sick person. Somehow becoming ill can cost us our credibility. This Atlantic article does a marvelous job of showing this in action — https://www.theatlantic.com/health/archive/2021/11/health-care-workers-long-covid-are-being-dismissed/620801/
Have you read any of Maya Dusenberry's work? It definitely ties in to your point about differences in male/female care. Although truthfully I'm a bit reluctant to go there as one of the worst examples of involuntary commitment to a psych ward I saw of an ME patient was of Thane Black Frederickson.
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick https://www.amazon.com/dp/0062470809/ref=cm_sw_r_awdo_E1GGNK62SE4BZKVDHSZG
Seconding this book rec!
Maya and her sister Lisa not only do amazing work, but they spent months caregiving for a dear friend with severe ME and mast cell disease. So truly living what they preach! (Sadly that friend Heather Colman-McGill subsequently passed away, but I am so grateful for the time she had because of the Dusenberrys)
Yes, I’m also a person with ME and have had similar invisibility issues and similar concerns for the newest cohort joining our ranks due to long covid. Thank you for mentioning this huge sector of invisibility (at least 1 million in the US before covid, now at least 7 million more!). The history of “unseeing” this illness just blows me away every time I reread about it -- here’s a good primer for anyone interested in the invisibility of this particular illness: Jen Brea’s TED talk on hers https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
And if you're interested in the ME and long covid connection, check this out!
https://www.sciencefocus.com/news/long-covid-patients-may-have-chronic-fatigue-syndrome/
Yes, we do this work as caregivers for elders, but this is a two way street.
What happens when the elders refuse to recognize the limitations of aging or refuse to recognize that they are aging and should plan for their future?
The younger relatives intervene and say something, but they refuse to listen. What next? Sue for guardianship? Have them declared incompetent? Deal with it as you can as they descend into whatever they are dealing with? They can create unnecessary hardships with their angers, resentments and refusal to deal.
What if they refuse to defer to the younger relatives who are more capapable? Or when the elderly person neglects their own health to the extent that caregiving at home is more and more of a challenge, regardless of how many children and grandchildren might be aroung to help?
Are they willing to reflect on that and recognize that for those ten years prior, assisted living might have helped, or that nursing home care might work for the last few years?
Are they willing to listen now?
I have definitely experienced this myself--I was in a really strange and sad situation last year when my elderly downstairs neighbor suddenly lost his ability to walk more than short distances. He started asking me to go to the store for him and quickly escalated to stranger and stranger requests--that I take his debit card and withdraw cash, that I bring him extra blankets while his windows were wide open in the snow, that I deliver a letter which I mistakenly opened and realized from the contents that he had been scammed for a large sum of money. I eventually strongarmed him into allowing a crisis team into his apartment, and I believe he was sectioned and taken to a nursing home against his will in the end. It was for the best, especially as they later told me that he was severely dehydrated and might have died soon otherwise. But it hurt so much, and unfairly so, to see his sadness and dismay at being taken away. I still feel angry at the younger version of himself who neglected to plan for his care in old age or acknowledge his eventual frailty.
Yes, these types of stories are so poignant. I'm so glad you were there for your neighbor, but it's unfortunate it had to come to that. In the cases I'm thinking of, they had more than enough knowledge and information to do what had to be done and plan, but an absolute refusal to recognize and follow up was the strategy. It's so easy to fall into a rut of complacency not realizing that the clock is ticking on us all.
Thank you for the shoutout! I really love the opportunity to think together with others about these important topics.
I was reminded of this discussion again when I read Peterson's article "Forced to Care": https://annehelen.substack.com/p/forced-to-care?s=r . It centers a little more on the perspective of the caregivers rather than those who need care, and I think it's a good complimentary read!
The book is really good, too! I'm drawing on it for a forthcoming piece in Mere Orthodoxy. https://amzn.to/3J7lRPr
Yeah, though the one thing that gives me some pause about the article is that on a personal level, I'm not sure that the "coerced" = "unchosen" = "bad" is always a great framing. Unchosen obligations aren't always bad and can be character shaping and life-affirming, and sometimes what we want isn't what we need. I think this could be framed better by looking at care work through a framework of unnecessary suffering vs necessary suffering (e.g. even in a much better world, a couple probably can't have two careers if they have a severely disabled child, but in that world they would have access to respite care, whatever necessary medical treatments, etc.).