:: Blog Warning: Conditions Heavy, Proceed With Caution :: This blog is not light. It's a follow up to the light blog before it. I'd appreciate your hanging in, as you never know when hanging in could save the life of someone you love, including yourself. (Thursday's blog will find us back in the land of the light hearted. Promise.)
In my previous blog Getting Back Up On the Horse That Threw You, I shared a bit of my struggle with developing patience when it comes to using my paw-like hands while wondering why patience can be such a variable commodity. My friend Omrum helped me see that once I "accept things as they are, patience is already there. Impatience has to do with having expectations--from others or from the self."
In my previous blog Getting Back Up On the Horse That Threw You, I shared a bit of my struggle with developing patience when it comes to using my paw-like hands while wondering why patience can be such a variable commodity. My friend Omrum helped me see that once I "accept things as they are, patience is already there. Impatience has to do with having expectations--from others or from the self."
When looking up definitions for patience and deciding on one to use for that blog--"a good-natured tolerance of delay or incompetence" (www.audioenglish.net)--, a few other definitions captured my attention.
The dictionary that came with my MacBook Dashboard describes patience as "the capacity to accept or tolerate delay, trouble or suffering without getting angry or upset."
Dictionary.com says that patience is "the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like."
The dictionary that came with my MacBook Dashboard describes patience as "the capacity to accept or tolerate delay, trouble or suffering without getting angry or upset."
Dictionary.com says that patience is "the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like."
Hmmm.... I think I see a trend here, and I suspect that the writer of that last definition has never been seriously ill. I have occasionally been upset about my illness and also from time to time share my experience with another person who is not likewise ill. In the U.S., as might be the case in other cultures, talking about illness is associated with being a complainer, with not being satisfied with your lot in life, flagrantly flailing about the hand one has been dealt. (Whereas surviving an accident may be, depending on the severity of one's injuries and how uncomfortable they make others feel, a badge of honor, a story that can be bandied about in awe and wonderment.)
At some point when a person is chronically, debilitatingly ill, that person's illness, and the reaction of others to that illness, becomes a large measure of his or her hero's journey. While trying to survive a serious illness, people have both successes and glaring defeats. It's a phenomenal process in every sense of the word, and we actually gain some insights that could prove useful to our non-ill brethren if they cared to listen.
The journey of people who have become debilitatingly ill is, among other things, one of considerable loss, and as anyone who has experienced great loss knows, loss is a formidable teacher. If someone with ME/CFS is to thrive (to make the best of what life offers), to snatch joy from life, grieving, reflection, and radical acceptance is essential. When you're too sick to stand or sit long enough to get a snack or cross a room unaided, when you've tossed dog food up into the air while passing out because your body has decided that picking up the dog bowls from the floor was a system fail, when you've lain in bed and found a pillow too tiring an incline, when you've been too exhausted to eat, when you've watched your symptoms wax and wane with a decidedly downward trend, when you've faced that the next step might be sponge baths, bedpans, and a feeding tube, then you've already experienced more loss than most people can fathom. (And life goes on around us. Family we love die and/or people we love leave us.)
Because we are on a hero's journey, one that is part of the human condition, one that is often brimming with opportunities to focus on surviving and perhaps thriving while surviving, it is not only harmful to us, but it is a waste for the relatively healthy portions of humankind to deny our journeys simply because culture dictates that our experience ought be considered a personal health misfortune. Something that ought not be talked about. It's likely that most people, if they don't die a quick death from illness or accident, will age and eventually become disabled and dependent. For this reason alone, it would be wise to hear us and take heed of our journeys.
Imagine feeling like you are not allowed to talk about the trials, tribulations, and joys of raising your children, the impact of technology on your job, the stresses and rewards couples face in the day in and day out of relationship. You probably probably have trouble imagining that. And yet, if your journey includes surviving a seriously debilitating illness while attempting to thrive, that's what society typically asks. Bring up just about any topic related to your specific illness (and not just the topic of medicine in general, what new diet you are trying, or what supplements are helping you sleep better--funny how healthy people focus on these things and yet, we're the ones who seem mono-focused), and people grow uncomfortable. It's as if you might break out into song about your bowel habits. So along with the major challenges and welcome successes that make up our lives, we are to forget sharing about the latest scientific discovery that may have great bearing on our futures.
Simply put: Being an invalid often means being IN-valid in western cultures when it comes to sharing our journeys with "healthy" people.
Similar to the admonition that was once delivered to children: it's better to be seen and not heard, those of us who are chronically ill often get the message that it is better to not be seen and not to be heard. Like children who ought to go play among the other children, we are left to find camaraderie along the way on our journeys with other people who are similarly "afflicted." Not that having other seriously ill friends doesn't positively add to the quality our lives--it does (the people I've met themselves are often phenomenal). And most of us are familiar with the idea that birds of a feather often flock together (e.g., new mothers, graduate students, newlyweds, etc.).
Moreover, perhaps the loudest message some if not many of us receive is that we ought to opt for the role of quietly inspiring invalid--that is, if we want a shot at social acceptance--versus living our lives out loud as might be permissible for everyone else. Alternately, we are expected to quietly endure our social isolation (which might happen even if we play the role of quietly inspiring invalid) when isolation is yet another nail in the coffin of an illness described by some as a living death.
But the fact is we did not die when we fell off society's radar, we did not cease to be, our lives are not IN-valid, and perhaps the vast majority of us do not wish to be excluded from life as we (all who are not debilitatingly ill) know it, though many of us must limit our social contact for health reasons. And while some, if not many of us, may have given up hope of making new 3D friends, given that we have no energy to put ourselves out there in the world to make friends who might accept our new reality, we look for signs that people in general have a better understanding of the nature of our illness. Personally, unbiased, balanced media coverage gives me hope that fewer of us will experience the pain of friend and family flight.
Having met so many incredible people who have ME/CFS, I patiently wait for us to be rediscovered as valid members of society with something of value to contribute, and perhaps I am not alone in this aspiration. (And if you think this is complaining, well, you've not been paying attention.)
[IF YOU HAVE ME/CFS, YOU MIGHT WANT TO TAKE A BREAK NOW and come back and read the 2nd half later. This essay is really a two parter; both parts are integrally linked.]
Another expectation of the ME/CFS community, which includes those that love us and stick by our sides, is that we be infinitely accepting and patient when it comes to how the medical profession and our various governments treat this illness. We have been admonished the way that disenfranchised people the world over have been admonished for eons. We are told to wait, be patient. Our time is coming.
However, any one who witnessed how focused media attention and anger lit a fire under AIDS research knows, it's the squeaky wheel that gets the grease. Unlike many AIDS patients, we are too sick to take to the streets in protest ourselves. Our governments have known about ME/CFS outbreaks for years and have been aware of the looming threat this illness poses, and yet, have done precious little. (For the United States, see NIH funding levels). And so this, RIGHT HERE, is where understanding and acceptance of our journeys and our need for 3D connections with the world meets our push to secure funding to find a cure.
We need you, and you need us.
Just as people made ill by chemicals have highlighted the use of illness-inducing chemicals in our work and home environments, resulting in healthier drink bottles and carpets, formaldehyde-free plywood and VOC-free paints for all our benefit, people with ME/CFS highlight, in part, the growing threat that is posed by a medical establishment that throws palliatives at serious illness like candy spinning from a broken pinata. Go where you will with that metaphor, but when something is broken the way our current approach to health care is broken, you don't keep throwing broken parts at it. The challenges those of us in the ME/CFS community have faced and continue to face shines a spotlight on the need for improved medical research, diagnosis, and care. (Well, currently, based on the general lack of enthusiasm by the public at large, it's more a pen light.)
RIGHT NOW, comparatively (i.e., comparing how ME/CFS disproportionally affects the population in relation to the research dollars allotted), we're in the funding ghetto... from research, to care, to training doctors to recognize the signs of ME/CFS onset so that the worst of the damage of this illness might be avoided or delayed. Meanwhile, people who are part of the problem pull the levers of distraction by focusing attention on how we, a vocal minority, are an angry group. (Though it no doubt works to the advantage of those who would discredit us by making us out to be a bag full of nuts, I think they have missed the point. More than anything, we're a persistent group. Leave people housebound for 20 or more years while ignoring an alarming rise in the number of people with the illness and you get what you get.)
Acceptance of the status quo? Seriously?
While I accept that things are the way they are, don't expect those of us in the community to be patient, to like it, to not be angry, to not complain, or to not do what we can to raise awareness and light a fire under people. Those with ME/CFS and those without.
There comes a time when delay smacks of malfeasance. When you look at the funding history for ME/CFS in the U.S., how private insurers (disability and health) have treated people who have become disabled by ME/CFS, and the lack of instruction by medical schools, it's difficult not to draw the conclusion that this is one of those times.
Patience is not a virtue when it comes to how ME/CFS is being treated by the medical establishment, private insurers, and most of the world's governments. Getting involved and speaking out is.
We'd like you to do your part. ::Speaking directly to people who are not part of the ME/CFS community, including the public at large and to doctors and researchers who have been sitting on the sidelines.::
If we can't get you to listen to our journeys, then how will we ever connect? How will you ever know the sort of health and economic threat this illness poses to the world? How will you know that many countries are missing the boat on this pressing health concern unless you investigate? How will you know that our numbers (including those who have been diagnosed and are desperately ill and the estimated number of people who have yet to receive a diagnosis) ought to alarm you unless you take a interest in our plight? How will you know that we're not joking that a country can ill afford to misstep with this particular illness unless you come to understand how debilitating this illness is, how long people are ill for, and the cost to society? Those elements are key in understanding the threat before us.
We will never have a chance at persuading you to stand up for and with us-- even if only because "there but the grace of God go I"--as we work for awareness and funding unless you allow our journey to be a part of your larger world (i.e., unless you can relate to us, and there's little hope of that happening if our journeys are considered unfit for polite society). Let's face it: When the AIDS epidemic hit, the seriousness of that illness forced us to talk openly about condoms. If we survived that as a culture, we can survive learning about ME/CFS.
My concern surpasses that of finding a cure for what ails people with the ME/CFS label. Immune illnesses are growing, and with that growth the threat to human life as we know it. From all that I've read, I am convinced that medical research into the role various pathogens play in the development of ME/CFS--from turning on and off gene expression to hiding in our macrophages to avoid detection--will prove to be the key piece that will make sense of the puzzle of chronic illness in general, from ALS to Parkinson's, MS, sarcoidosis, arthritis, diabetes, heart disease, Alzheimer's, and so on.
Meaning, a healthier future for all starts with you. If you have ever wondered whether in your life time you'd face a social need that would demand your action, look no further. This is that social need. And the time is Now. We need you not only because social support is essential for us as social beings, but because we need you to be our research partners, our legs, and for you to add your voice to our chorus and to speak up for those of us too ill to speak.
Cast patience to the wind and be virtuous. Truly, the life you know may depend on it.
Say it with me: Patience, Smatience!
P.S. In some small way, I hope your passion for the entire human experience and your sense of having a vested interest in the health of generations to come has been given a boost by reading this. While anger can be a motivating emotion, love--love of life--informs my actions. None of us, healthy or chronically ill, can afford to live our lives in anger.
----------------------------
ClaireliciousDesigns on Zazzle
Designs Just for chronics
Social Pariah T-shirt
Designs Just for them that TRULY love us
Buttons, mugs, bumper stickers, etc.
At some point when a person is chronically, debilitatingly ill, that person's illness, and the reaction of others to that illness, becomes a large measure of his or her hero's journey. While trying to survive a serious illness, people have both successes and glaring defeats. It's a phenomenal process in every sense of the word, and we actually gain some insights that could prove useful to our non-ill brethren if they cared to listen.
The journey of people who have become debilitatingly ill is, among other things, one of considerable loss, and as anyone who has experienced great loss knows, loss is a formidable teacher. If someone with ME/CFS is to thrive (to make the best of what life offers), to snatch joy from life, grieving, reflection, and radical acceptance is essential. When you're too sick to stand or sit long enough to get a snack or cross a room unaided, when you've tossed dog food up into the air while passing out because your body has decided that picking up the dog bowls from the floor was a system fail, when you've lain in bed and found a pillow too tiring an incline, when you've been too exhausted to eat, when you've watched your symptoms wax and wane with a decidedly downward trend, when you've faced that the next step might be sponge baths, bedpans, and a feeding tube, then you've already experienced more loss than most people can fathom. (And life goes on around us. Family we love die and/or people we love leave us.)
Because we are on a hero's journey, one that is part of the human condition, one that is often brimming with opportunities to focus on surviving and perhaps thriving while surviving, it is not only harmful to us, but it is a waste for the relatively healthy portions of humankind to deny our journeys simply because culture dictates that our experience ought be considered a personal health misfortune. Something that ought not be talked about. It's likely that most people, if they don't die a quick death from illness or accident, will age and eventually become disabled and dependent. For this reason alone, it would be wise to hear us and take heed of our journeys.
Imagine feeling like you are not allowed to talk about the trials, tribulations, and joys of raising your children, the impact of technology on your job, the stresses and rewards couples face in the day in and day out of relationship. You probably probably have trouble imagining that. And yet, if your journey includes surviving a seriously debilitating illness while attempting to thrive, that's what society typically asks. Bring up just about any topic related to your specific illness (and not just the topic of medicine in general, what new diet you are trying, or what supplements are helping you sleep better--funny how healthy people focus on these things and yet, we're the ones who seem mono-focused), and people grow uncomfortable. It's as if you might break out into song about your bowel habits. So along with the major challenges and welcome successes that make up our lives, we are to forget sharing about the latest scientific discovery that may have great bearing on our futures.
Simply put: Being an invalid often means being IN-valid in western cultures when it comes to sharing our journeys with "healthy" people.
Similar to the admonition that was once delivered to children: it's better to be seen and not heard, those of us who are chronically ill often get the message that it is better to not be seen and not to be heard. Like children who ought to go play among the other children, we are left to find camaraderie along the way on our journeys with other people who are similarly "afflicted." Not that having other seriously ill friends doesn't positively add to the quality our lives--it does (the people I've met themselves are often phenomenal). And most of us are familiar with the idea that birds of a feather often flock together (e.g., new mothers, graduate students, newlyweds, etc.).
Moreover, perhaps the loudest message some if not many of us receive is that we ought to opt for the role of quietly inspiring invalid--that is, if we want a shot at social acceptance--versus living our lives out loud as might be permissible for everyone else. Alternately, we are expected to quietly endure our social isolation (which might happen even if we play the role of quietly inspiring invalid) when isolation is yet another nail in the coffin of an illness described by some as a living death.
But the fact is we did not die when we fell off society's radar, we did not cease to be, our lives are not IN-valid, and perhaps the vast majority of us do not wish to be excluded from life as we (all who are not debilitatingly ill) know it, though many of us must limit our social contact for health reasons. And while some, if not many of us, may have given up hope of making new 3D friends, given that we have no energy to put ourselves out there in the world to make friends who might accept our new reality, we look for signs that people in general have a better understanding of the nature of our illness. Personally, unbiased, balanced media coverage gives me hope that fewer of us will experience the pain of friend and family flight.
Having met so many incredible people who have ME/CFS, I patiently wait for us to be rediscovered as valid members of society with something of value to contribute, and perhaps I am not alone in this aspiration. (And if you think this is complaining, well, you've not been paying attention.)
[IF YOU HAVE ME/CFS, YOU MIGHT WANT TO TAKE A BREAK NOW and come back and read the 2nd half later. This essay is really a two parter; both parts are integrally linked.]
Another expectation of the ME/CFS community, which includes those that love us and stick by our sides, is that we be infinitely accepting and patient when it comes to how the medical profession and our various governments treat this illness. We have been admonished the way that disenfranchised people the world over have been admonished for eons. We are told to wait, be patient. Our time is coming.
However, any one who witnessed how focused media attention and anger lit a fire under AIDS research knows, it's the squeaky wheel that gets the grease. Unlike many AIDS patients, we are too sick to take to the streets in protest ourselves. Our governments have known about ME/CFS outbreaks for years and have been aware of the looming threat this illness poses, and yet, have done precious little. (For the United States, see NIH funding levels). And so this, RIGHT HERE, is where understanding and acceptance of our journeys and our need for 3D connections with the world meets our push to secure funding to find a cure.
We need you, and you need us.
Just as people made ill by chemicals have highlighted the use of illness-inducing chemicals in our work and home environments, resulting in healthier drink bottles and carpets, formaldehyde-free plywood and VOC-free paints for all our benefit, people with ME/CFS highlight, in part, the growing threat that is posed by a medical establishment that throws palliatives at serious illness like candy spinning from a broken pinata. Go where you will with that metaphor, but when something is broken the way our current approach to health care is broken, you don't keep throwing broken parts at it. The challenges those of us in the ME/CFS community have faced and continue to face shines a spotlight on the need for improved medical research, diagnosis, and care. (Well, currently, based on the general lack of enthusiasm by the public at large, it's more a pen light.)
RIGHT NOW, comparatively (i.e., comparing how ME/CFS disproportionally affects the population in relation to the research dollars allotted), we're in the funding ghetto... from research, to care, to training doctors to recognize the signs of ME/CFS onset so that the worst of the damage of this illness might be avoided or delayed. Meanwhile, people who are part of the problem pull the levers of distraction by focusing attention on how we, a vocal minority, are an angry group. (Though it no doubt works to the advantage of those who would discredit us by making us out to be a bag full of nuts, I think they have missed the point. More than anything, we're a persistent group. Leave people housebound for 20 or more years while ignoring an alarming rise in the number of people with the illness and you get what you get.)
Acceptance of the status quo? Seriously?
While I accept that things are the way they are, don't expect those of us in the community to be patient, to like it, to not be angry, to not complain, or to not do what we can to raise awareness and light a fire under people. Those with ME/CFS and those without.
There comes a time when delay smacks of malfeasance. When you look at the funding history for ME/CFS in the U.S., how private insurers (disability and health) have treated people who have become disabled by ME/CFS, and the lack of instruction by medical schools, it's difficult not to draw the conclusion that this is one of those times.
Patience is not a virtue when it comes to how ME/CFS is being treated by the medical establishment, private insurers, and most of the world's governments. Getting involved and speaking out is.
We'd like you to do your part. ::Speaking directly to people who are not part of the ME/CFS community, including the public at large and to doctors and researchers who have been sitting on the sidelines.::
If we can't get you to listen to our journeys, then how will we ever connect? How will you ever know the sort of health and economic threat this illness poses to the world? How will you know that many countries are missing the boat on this pressing health concern unless you investigate? How will you know that our numbers (including those who have been diagnosed and are desperately ill and the estimated number of people who have yet to receive a diagnosis) ought to alarm you unless you take a interest in our plight? How will you know that we're not joking that a country can ill afford to misstep with this particular illness unless you come to understand how debilitating this illness is, how long people are ill for, and the cost to society? Those elements are key in understanding the threat before us.
We will never have a chance at persuading you to stand up for and with us-- even if only because "there but the grace of God go I"--as we work for awareness and funding unless you allow our journey to be a part of your larger world (i.e., unless you can relate to us, and there's little hope of that happening if our journeys are considered unfit for polite society). Let's face it: When the AIDS epidemic hit, the seriousness of that illness forced us to talk openly about condoms. If we survived that as a culture, we can survive learning about ME/CFS.
My concern surpasses that of finding a cure for what ails people with the ME/CFS label. Immune illnesses are growing, and with that growth the threat to human life as we know it. From all that I've read, I am convinced that medical research into the role various pathogens play in the development of ME/CFS--from turning on and off gene expression to hiding in our macrophages to avoid detection--will prove to be the key piece that will make sense of the puzzle of chronic illness in general, from ALS to Parkinson's, MS, sarcoidosis, arthritis, diabetes, heart disease, Alzheimer's, and so on.
Meaning, a healthier future for all starts with you. If you have ever wondered whether in your life time you'd face a social need that would demand your action, look no further. This is that social need. And the time is Now. We need you not only because social support is essential for us as social beings, but because we need you to be our research partners, our legs, and for you to add your voice to our chorus and to speak up for those of us too ill to speak.
Cast patience to the wind and be virtuous. Truly, the life you know may depend on it.
Say it with me: Patience, Smatience!
P.S. In some small way, I hope your passion for the entire human experience and your sense of having a vested interest in the health of generations to come has been given a boost by reading this. While anger can be a motivating emotion, love--love of life--informs my actions. None of us, healthy or chronically ill, can afford to live our lives in anger.
----------------------------
ClaireliciousDesigns on Zazzle
Designs Just for chronics
Social Pariah T-shirt
Designs Just for them that TRULY love us
Buttons, mugs, bumper stickers, etc.
So well said Claire! I can think of a few researchers who have recently been so critical of the ME patient community who need to read this!
ReplyDeleteThis is excellent, Claire! I wish that there were a way to get this out to the general public.
ReplyDeleteI'm glad you think so. About all I know to do is share it on FB. :)
ReplyDeleteClaire,
ReplyDeleteCan I reprint this in our WISCONSIN newsletter lifeline? People who do not use computers need to know about these ideas...
If so, would you write a credit line.
Pat... send me a message on FB (don't use the "L" to find me), and I'll give you a credit line. (My avatar at the moment is a picture of a nebula in space... like where else would it be?)
ReplyDeleteClaire, what you've written is great.
ReplyDeleteI wonder if you couldn't submit it to an online journal? Unfortunately I don't have any specific ideas as I have ME/CFS myself with major brain-fog.
I would contact the health editors at various media sites if I were you.
Liz, Thanks for the compliment.
ReplyDeleteThat's a great idea you have... and it sounds like it would take energy! LOL! Note that I also referenced nothing. I wonder if that's still a requirement for journals, or is that only science journals?
Anyone with a promising link or a contact? I'll follow up.
Claire, I love your blog so far. I am enjoying reading it very much. I have CFS/ME as well as being Aspie, so it was nice to find your blog. Thank you so much for sharing this all with everyone.
ReplyDeleteBird @ takealeftatthemoon.blogspot.com
Well, Bird, we really aren't all alone!
ReplyDeleteI'm glad to share... we need to make our voices heard I think.