Four years ago, after struggling on and off for 34 years (since I was six years old) with what was basically a mystery illness, I was diagnosed with chronic Epstein Barr virus. The only person who ever believed there was anything wrong with me was my mom -- and surprisingly, even after I FINALLY got a doctor to say, "Yes, this is real, this isn't in your head, and this is the name for it," that was still mostly the case. My husband, my immediate family, everyone was kind of mildly tolerant and helped me if I asked outright for specific support, but there was still this miasma of... "are you even really sick?" The only reason I didn't give up all hope was because of my mother.
The point I am trying to make is that one of the most powerful things people can do, perhaps even before anything else, is BELIEVE people with chronic illness. I can't prove to you that I am exhausted in a way that defies words; I cannot prove to you that I feel like I have mono, all day every day, week after week, month after month -- all I can do is tell you and hope that you believe me.
I read O'Rourke's book about a month ago and I can't remember if she mentioned this or not, but I think there might be actual healing power in being believed. Maybe not at the cellular level, but definitely at the psychological one. The minute my (functional medicine) doctor said, "You have a virus, and this is why you've felt bad for so, so long," I burst into tears. Validation matters.
YES, I am sure there are cellular impacts of being believed, Sarah. Such a good point. And yes, O'Rourke touches on what a difference it made for her when a doctor simply said, in essence, "I don't know what's going on with you, but I see you're in pain. I believe you are suffering."
I remember listening to an audiobook by Dr Andrew Weil, who treated a woman with a "mystery disease" He not only believed her, he told her that he firmly believed she could get better. Which ultimately she did. Later, she said he was the first and only (of many) doctor who had told her that. Amazing.
I absolutely agree that there is healing that happens when being believed. I too have chronic EBV - newly diagnosed and figuring out now what to do about it.
I’m sorry to hear it. I’m happy to report, though, that after a couple of years of intense, targeted immune support (and a year of extra sleep thanks to pandemic lockdown), I’m no longer in a period of activation. I wouldn’t wish chronic EBV on anyone, but I’m grateful for the ways I’ve learned to take better care of myself. I hope you are able to access a health care provider that believes and helps you — don’t give up.
Thank you Sarah for your words of encouragement. It feels like a big mountain. It helps to hear that it’s possible. It’s requiring a level of self care and attention that I’ve never had.
When you are part of the care team for people with severe chronic illness or disability, there is also the risk of feeling too much to be useful, particularly over the long haul. Each of us can consider where we are on the continuum of distress for those we want to support and help.
One memoir by someone of color is Esme Wang's The Collected Schizophrenias.
Perhaps not what you are looking for, but in this arena are two pieces of writing by Andrew Solomon. His memoir about depression, the Noonday Demon, is valuable for anyone who loves someone with chronic depression. His book Far from the Tree is about parenting children with substantial impairment, disability, or disorder, an extensive set of case studies based on interviews with parents.
You struck a chord with this one.My husband suffers from diabetes, heart disease, arthritis and now macular degeneration. I struggle to really understand his experience with pain daily. I try to empathize and offer help when I can but I do not know his experience. I, fortunately, remain healthy with my aging process but that is not his case. Your words are a great comfort to me that I am not alone. I don't want to discount his experience but I cannot relate. Thank you for easing my mind. I will stop beating up on myself for being impatient at times and resenting the constraints he has that impact me. I can let those feelings wash over me and then attend to what needs to be done. This is hard stuff. My mom died young and my dad was healthy and active until the last year of his life. So I have no role model to follow except my friends who are trying to navigate similar experiences. Thank you for sharing honestly so I can be more tolerant and caring for him and for myself.
I love how you put this, Theresa. I think understanding what our own exhaustion and sometimes even resistance is to chronic illness, as those who love people with them, is a big first step in us being able to be there for people we love more skillfully. Forgiving ourselves our own limitations seems like a big part of this.
The unworried well is such a broadly useful phrase, crucially linking ableism with racism with sexism with any form of “wellness” that springs unquestionably (in both senses of that word) from fitting the dominant culture’s notion of normal/good/useful.
This one really hit home for me, Courtney. Chapters 28 and 44 of The Mindful Grandparent: The Art of Loving Our Children's Children tell (some of) the story of the horrendous struggle our whole family faced when our daughter, a mother of a toddler, developed multiple symptoms of increasing severity that doctors could not diagnose. I believed my daughter, and we tried scores of remedies. I lost sleep and became depressed myself when nothing seemed to work. The documentary Unrest you mentioned is excellent, and this experience introduced our whole family to the world of the chronically unwell. Fortunately, our daughter is now healthy and vibrant and so am I, but we are now aware. I want to read these two books, and, like you, I think the chronically unwell people may be linked to a chronically unwell planet.
I was married to a man for 18 years who suffered sometimes from depression then, ultimately, horribly from it. Unfortunately depression is such a tricky disease, he was unable/unwilling? to accept that he had it, so I found myself loving someone deeply who had a chronic illness and yet refused to acknowledge and therefore treat it. He eventually, after 4-5 years of hell, mine and his, agreed to get medication, but I think the habits were so ingrained by that time, they didn’t change and it ultimately became unbearable to live that way and we have since separated.
It’s a different twist on what you’ve written about - your beloveds KNOW they are in pain and can’t stop it. My beloved was in pain yet couldn’t recognize it - it was the water he was swimming in - and he was unable to hear my concerns.
It was horrible not being able to help him AND having to live with the manifestations of his illness - depression, resistance, inability to work or do much of anything, lethargy, being shut down and unable to communicate at times.
I ultimately had to end the marriage because I was going under with him. I am now learning anew what normal interactions feel like - how it is to have a roommate who functions! I no longer knew how they felt, much less to expect it!
I have deep compassion for his suffering - it kept me with him for years and years - but ultimately I had to develop compassion for my own suffering and THAT was something I could do something about. And did.
I felt awful and sad leaving him in his mire, but lack of willingness to fully address his issues (I know that depression makes that difficult to do) made the marriage damaging and destructive to me.
I often wondered if it would be different if he were a paraplegic and I’d had to care for him and those extreme needs? It felt like a physical illness would have been so much clearer to treat/a knowledge/recognize, etc. especially by HIM!
It was a very confusing journey and I still sometimes question if I couldn’t have done more somehow.
Chronic illnesses are so challenging. Hopefully my story will give you another wrinkle to consider as you think through the issue.
Thank you for this, Susan. I bet so many people can relate to what you've been through. And yes, what of the layers that so many people deal with is having someone refuse to acknowledge their chronic illness OR become so identified with it that little else can see the light. How do we get in the in between? How do we meet people where they are? And take care of our own vitality and chance of living a thriving life? Big, messy questions. Thanks for being honest enough here to spark them.
Indeed. Trying to get in the inbetween where a spark of the beloved can still be seen - it became an insurmountable task. And taking care of myself - another one.
My 20-year-old nephew is here visiting for ten weeks and the first few days with him are showing me what it can be like to live with someone with energy and vitality and a can-do attitude and positivity. I can feel my own beginning to stream back in in the face of his. I’d forgotten how magical hope and positivity and optimism and a belief in the goodness of the world can feel!
Thank you for this, Courtney, especially the paragraph about the climate. Your readers might also be interested in the work of writer/activist Rivka Solomon https://www.youtube.com/watch?v=_6QEFXOZAOc.
Four years ago, after struggling on and off for 34 years (since I was six years old) with what was basically a mystery illness, I was diagnosed with chronic Epstein Barr virus. The only person who ever believed there was anything wrong with me was my mom -- and surprisingly, even after I FINALLY got a doctor to say, "Yes, this is real, this isn't in your head, and this is the name for it," that was still mostly the case. My husband, my immediate family, everyone was kind of mildly tolerant and helped me if I asked outright for specific support, but there was still this miasma of... "are you even really sick?" The only reason I didn't give up all hope was because of my mother.
The point I am trying to make is that one of the most powerful things people can do, perhaps even before anything else, is BELIEVE people with chronic illness. I can't prove to you that I am exhausted in a way that defies words; I cannot prove to you that I feel like I have mono, all day every day, week after week, month after month -- all I can do is tell you and hope that you believe me.
I read O'Rourke's book about a month ago and I can't remember if she mentioned this or not, but I think there might be actual healing power in being believed. Maybe not at the cellular level, but definitely at the psychological one. The minute my (functional medicine) doctor said, "You have a virus, and this is why you've felt bad for so, so long," I burst into tears. Validation matters.
YES, I am sure there are cellular impacts of being believed, Sarah. Such a good point. And yes, O'Rourke touches on what a difference it made for her when a doctor simply said, in essence, "I don't know what's going on with you, but I see you're in pain. I believe you are suffering."
I remember listening to an audiobook by Dr Andrew Weil, who treated a woman with a "mystery disease" He not only believed her, he told her that he firmly believed she could get better. Which ultimately she did. Later, she said he was the first and only (of many) doctor who had told her that. Amazing.
I absolutely agree that there is healing that happens when being believed. I too have chronic EBV - newly diagnosed and figuring out now what to do about it.
I’m sorry to hear it. I’m happy to report, though, that after a couple of years of intense, targeted immune support (and a year of extra sleep thanks to pandemic lockdown), I’m no longer in a period of activation. I wouldn’t wish chronic EBV on anyone, but I’m grateful for the ways I’ve learned to take better care of myself. I hope you are able to access a health care provider that believes and helps you — don’t give up.
Thank you Sarah for your words of encouragement. It feels like a big mountain. It helps to hear that it’s possible. It’s requiring a level of self care and attention that I’ve never had.
I hear you 1000%. And it can feel like such an alone thing -- but I promise you are not alone. It's possible.
When you are part of the care team for people with severe chronic illness or disability, there is also the risk of feeling too much to be useful, particularly over the long haul. Each of us can consider where we are on the continuum of distress for those we want to support and help.
One memoir by someone of color is Esme Wang's The Collected Schizophrenias.
Perhaps not what you are looking for, but in this arena are two pieces of writing by Andrew Solomon. His memoir about depression, the Noonday Demon, is valuable for anyone who loves someone with chronic depression. His book Far from the Tree is about parenting children with substantial impairment, disability, or disorder, an extensive set of case studies based on interviews with parents.
Great suggestions, thanks Fritzie. I've seen that Wang book and been interested. I'll have to pick it up.
You struck a chord with this one.My husband suffers from diabetes, heart disease, arthritis and now macular degeneration. I struggle to really understand his experience with pain daily. I try to empathize and offer help when I can but I do not know his experience. I, fortunately, remain healthy with my aging process but that is not his case. Your words are a great comfort to me that I am not alone. I don't want to discount his experience but I cannot relate. Thank you for easing my mind. I will stop beating up on myself for being impatient at times and resenting the constraints he has that impact me. I can let those feelings wash over me and then attend to what needs to be done. This is hard stuff. My mom died young and my dad was healthy and active until the last year of his life. So I have no role model to follow except my friends who are trying to navigate similar experiences. Thank you for sharing honestly so I can be more tolerant and caring for him and for myself.
I love how you put this, Theresa. I think understanding what our own exhaustion and sometimes even resistance is to chronic illness, as those who love people with them, is a big first step in us being able to be there for people we love more skillfully. Forgiving ourselves our own limitations seems like a big part of this.
The unworried well is such a broadly useful phrase, crucially linking ableism with racism with sexism with any form of “wellness” that springs unquestionably (in both senses of that word) from fitting the dominant culture’s notion of normal/good/useful.
This one really hit home for me, Courtney. Chapters 28 and 44 of The Mindful Grandparent: The Art of Loving Our Children's Children tell (some of) the story of the horrendous struggle our whole family faced when our daughter, a mother of a toddler, developed multiple symptoms of increasing severity that doctors could not diagnose. I believed my daughter, and we tried scores of remedies. I lost sleep and became depressed myself when nothing seemed to work. The documentary Unrest you mentioned is excellent, and this experience introduced our whole family to the world of the chronically unwell. Fortunately, our daughter is now healthy and vibrant and so am I, but we are now aware. I want to read these two books, and, like you, I think the chronically unwell people may be linked to a chronically unwell planet.
I'm so sorry you all went through that, Shirley, and I'm so glad your daughter had you through it all.
Thank you so much for this. I have a chronic illness and know folks with the same and you hit on many points that resonated with me .
I was married to a man for 18 years who suffered sometimes from depression then, ultimately, horribly from it. Unfortunately depression is such a tricky disease, he was unable/unwilling? to accept that he had it, so I found myself loving someone deeply who had a chronic illness and yet refused to acknowledge and therefore treat it. He eventually, after 4-5 years of hell, mine and his, agreed to get medication, but I think the habits were so ingrained by that time, they didn’t change and it ultimately became unbearable to live that way and we have since separated.
It’s a different twist on what you’ve written about - your beloveds KNOW they are in pain and can’t stop it. My beloved was in pain yet couldn’t recognize it - it was the water he was swimming in - and he was unable to hear my concerns.
It was horrible not being able to help him AND having to live with the manifestations of his illness - depression, resistance, inability to work or do much of anything, lethargy, being shut down and unable to communicate at times.
I ultimately had to end the marriage because I was going under with him. I am now learning anew what normal interactions feel like - how it is to have a roommate who functions! I no longer knew how they felt, much less to expect it!
I have deep compassion for his suffering - it kept me with him for years and years - but ultimately I had to develop compassion for my own suffering and THAT was something I could do something about. And did.
I felt awful and sad leaving him in his mire, but lack of willingness to fully address his issues (I know that depression makes that difficult to do) made the marriage damaging and destructive to me.
I often wondered if it would be different if he were a paraplegic and I’d had to care for him and those extreme needs? It felt like a physical illness would have been so much clearer to treat/a knowledge/recognize, etc. especially by HIM!
It was a very confusing journey and I still sometimes question if I couldn’t have done more somehow.
Chronic illnesses are so challenging. Hopefully my story will give you another wrinkle to consider as you think through the issue.
Thank you for this, Susan. I bet so many people can relate to what you've been through. And yes, what of the layers that so many people deal with is having someone refuse to acknowledge their chronic illness OR become so identified with it that little else can see the light. How do we get in the in between? How do we meet people where they are? And take care of our own vitality and chance of living a thriving life? Big, messy questions. Thanks for being honest enough here to spark them.
Indeed. Trying to get in the inbetween where a spark of the beloved can still be seen - it became an insurmountable task. And taking care of myself - another one.
My 20-year-old nephew is here visiting for ten weeks and the first few days with him are showing me what it can be like to live with someone with energy and vitality and a can-do attitude and positivity. I can feel my own beginning to stream back in in the face of his. I’d forgotten how magical hope and positivity and optimism and a belief in the goodness of the world can feel!
Thank you for this, Courtney, especially the paragraph about the climate. Your readers might also be interested in the work of writer/activist Rivka Solomon https://www.youtube.com/watch?v=_6QEFXOZAOc.
Thank you, Louise!
Thank for this post Courtney. I can’t remember feeling well and have absolutely come face to face with the brokenness of healthcare in America.