Disclaimer #1: Nothing in this post should be construed in
any way as minimizing or mocking the ordeals of the acutely or terminally
ill. They too deserve our utmost
respect, love and support.
Disclaimer #2: I use the term “chronically ill” throughout this and other posts, but I am not sure if I am using it correctly. Psoriasis is a chronic illness. I have psoriasis. It’s not disabling (at least mine isn’t.) By chronically ill, I mean those people who suffer from disabling, debilitating, often times invisible illnesses which may or may not be recognized by the medical system. These illnesses include, but are not limited to, Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, Multiple Chemical Sensitivities, Fluoroquinolone Toxicity, Chronic Lyme, Mold Toxicity, Sarcoidosis, POTS, et cetera. To differentiate between these diseases and other well-known chronic illnesses, I will place the term in quotation marks. If anybody has any suggestions for a better term, please let me know.
Sorry I haven’t posted in so long. In addition to all the ordinary excuses one might have for not writing, the bell has been ringing far too frequently of late.
One of the things that a caregiver for the “chronically ill”, or the “chronically ill” themselves, often comes up against is the lack of material and emotional support from the medical establishment and society as a whole. Sadly, this lack of support often extends to friends and family. This has been on the forefront of my mind lately.
The question I ask is why?
Why are the “chronically ill” separated from society? Why is their suffering viewed as unequal to those who suffer from other illnesses? Why are they deemed unworthy of respect and support? Why aren’t they held in the high esteem that they should be? Why don’t we look at them as the inspirational role models that they are? Why have we forgotten about the “chronically ill”?
I often ask myself these questions and try to rationalize the response (or lack thereof) to my wife’s illness.
The most obvious reason why this phenomenon might be witnessed is that people just don’t care. Fortunately, I’m not yet so cynical as to be able to accept this hypothesis. If you were told that your mother had breast cancer, you would care. Not only would you care, you would take action. Look around. The news is replete with examples of extraordinary compassion towards very sick people. You can’t turn around without being forwarded information about a fundraiser for someone who needs a kidney transplant or seeing a 5k walk to raise awareness for breast cancer.
So people do care. If you have the empathy and ability to care (which you do as evidenced by the first example), it then follows that if you knew that a loved one had a debilitating illness that largely prevented them from living their life, you would also do everything humanly possible to help, regardless of what that illness was.
So why don’t you? I can come up with a few possible reasons why people don’t take action.
People don’t believe the “chronically ill” are sick unless their disability is visible or has a name they are familiar with:
I think this, unfortunately, might be the biggest obstacle the “chronically ill” need to overcome. More unfortunately, I think a lot of this has to do with the current broken state of our medical system. Many conventional doctors don’t acknowledge a lot of chronic illnesses. In turn, many people, who for some reason forget that doctor error is the third leading cause of death in America, place absolute faith and trust in doctors. If doctors can’t find anything wrong, then nothing must be wrong.
This is deplorable on so many levels. First of all, the absolute lack of compassion the medical community has for some of the sickest members of society is astonishing. I’ve said it before and I’ll say it again, I know people with Stage 3 cancer who are more functional and have a higher quality of life than my wife, who was diagnosed with something you’ve never heard of, and that was only after visiting dozens of doctors. I know people who are just as sick as my wife who have no official diagnosis. The lack of respect that most conventional doctors show to these people is absolutely inhumane. And it needs to be said that women who suffer from chronic illness are treated even worse. The next doctor who rolls his eyes at my wife and says, “It sounds like you’re just stressed and need to relax more.” is going to have an extremely angry Marine coming across the exam room at him (in fact, I think one already did…) This initial insult is compounded by a society which then discards these people who are among the most vulnerable in our nation.
Why is this? In my opinion, it’s at least partly because our medical system is run by the insurance and pharmaceutical companies. As a quick, possibly over-simplified example, the insurance code (the little numbers you’ve all probably seen on the Explanation of Benefits you get from your health care provider) for Glucocorticoid Deficiency is 255.41. In most cases, to receive that diagnosis, you need full blown Addison’s Disease, which means that certain approved clinical tests need to show that your adrenal glands have lost a certain percentage of their function, or your blood cortisol levels need to drop dangerously low. Do you know what the code is if your adrenal glands are significantly impaired, but the exact number on the blood test you took that day isn’t below the established threshold value? There is none. Therefore, in the eyes of the American medical system, you are not sick. I guarantee you, however, that you ain’t gonna feel too hot if your cortisol levels are only 1 nmol/l above the threshold value.
In other cases, our system focuses on conditions that can be “cured” with a pill (the fact that many of these pills cause a lot of the conditions that the “chronically ill” suffer from is a whole ‘nuther blog post. Or maybe about 12 other blog posts…) There is no prescription you can take that effectively cures chronic fatigue or the host of other invisible illnesses that the “chronically ill” suffer from. You can call me a cynic, but after five years of caring for my very sick wife and taking her to doctor after doctor, I can tell you that if the pharmaceutical companies can’t make money at it, they aren’t that interested in your condition. And it’s not some grand conspiracy. People aren’t getting together in secret meetings in corporate boardrooms trying to “keep the man down” or anything. It’s just business. Chemo has a return on investment. Preventative medicine does not. It’s that simple.
This has real world implications. It’s not just that this attitude is disrespectful to the sick among us. This attitude prevents many “chronically ill” from getting the medical attention they need and deserve. It also prevents many, if not most, of the “chronically ill” from receiving any disability compensation. Many extremely sick people, who do not have an “official” diagnosis are denied disability claims and are told they are making everything up for financial gain. This insult is compounded when they see so many people getting by on insurance scams. Why does nobody question the cop on full disability with the “undetermined back injury” while at the same time they look down their nose at those with chronic fatigue or an illness of toxicity? How is the double-standard acceptable in our society? So many sick people have to drag themselves to work until they ultimately can no longer do it and have to rely on the support of friends and family. Many of those without the support of friends and family then end up homeless and many resort to suicide. It is unacceptable that this happens in a civilized society.
So what can you do? Just believe your family member/ friend/ co-worker. Show them the same respect and courtesy you would show to somebody who had an “officially recognized” illness. Your best friend whom you’ve known since grade school didn’t suddenly lose their mind and decide to drop out of society. They are truly sick. Help them the way you would help them if you were told they had any other illness.
People don’t understand “chronic illness”:
This is closely related to the first issue. “Chronic illnesses” usually don’t have a tidy label that can be affixed to them. If I were to say, so-and-so has, let’s say ALS, it would immediately register in your brain that so-and-so were quite ill and possibly in grave danger. You would spring into action to help. I can’t do that with my wife. People ask me what’s wrong with her, and it’s very difficult to explain. She suffers from multiple conditions which have a complex interaction with each other which lead to her being disabled. When I try to explain, people often get nervous, and awkwardly end the conversation. I can’t sum it up in one word.
But why should I have to?
I don’t have to tell people, “Well, there’s a possible genetic pre-disposition, but more than likely, after decades of being subjected to environmental toxins, certain cells within my mother’s lungs have mutated, making them unresponsive to normal biochemical signals, and they have started reproducing at an abnormal rate…” I just need to say, “My mother has lung cancer.” End of story. The response is immediate and universal: “That’s terrible. I’m so sorry. Is there anything I can do to help?”
Why such the marked difference? Is it really all in the name?
The “chronically ill” should not have to give a doctoral thesis every time they try to explain their sickness. People who already feel terrible should not have to justify and prove the fact that they feel terrible. It’s not right that they are treated this way.
So how can you help? Again, just show some basic respect and trust your “chronically ill” loved one or patient. It’s very closely related to the first point, but when somebody tells you that they feel very sick, and they have obviously, uncharacteristically given up much (say lost a job) due to this illness, just treat them with basic dignity and understand that they are very sick, and see what you could do to help. Helping a person who often barely has the energy to get out of bed with some basic chores, or even just visiting on a good day could really make a difference.
Another way you can help is by watching videos or reading websites about your friend’s illness to educate yourself. Many “chronically ill” people post items about their illness on social media sites to raise awareness for their condition. Just liking a post, or better yet sharing it, helps the “chronically ill” to know that people are interested in learning about their condition. It sounds simple and silly, but it really means the world to a lot of “chronically ill” people just to know that others care. And who knows, you may even help yourself or your family in the process. One thing I’ve learned is that the “chronically ill” are the canaries in the coalmine. Many of their conditions are caused by toxicity, and they have learned a lot of important information about how to protect themselves from toxins. Why should that matter to you? Because the things that are toxic to the chronically ill are also toxic to you. The dose just hasn’t gotten high enough to affect you yet. Most of us won’t get the early warning that the “chronically ill” get. For us, it will be too late.
Also, medical bills for the “chronically ill” are often astronomical because many have lost their jobs and in many cases, insurance doesn’t cover their treatment because they “aren’t sick” (see Point #1). See if they need a fundraiser to help out. If you were out at a bar, and somebody was raising money for some random person you’ve never met to get chemo, you’d pitch in $5 no questions asked. Why wouldn’t you do at least as much, for somebody you know, whose medical expenses aren’t covered by insurance, which often amount to several thousand dollars a year?
The root of the word itself:
I think that even if you believe and understand the gravity of the situation, this might be the chain that is holding people back from action. Terminal illnesses are just that. They have an end. Chronic illnesses do not. They drag on. And on and on and on. It takes a special type of person to step up to the challenges of a chronic illness. I’ve often compared it to running. Anybody can sprint to the finish line. It takes uncommon endurance to complete a marathon.
The stories that we turn to for inspiration follow one of two templates. They either have happy endings (person gets sick, person gets better, person lives happily ever after) or they are tragedies (person gets sick, person struggles bravely, person dies). These are the two models of illness that our society has set up as inspirational. We are either inspired by the hope and determination of those who survive or by the love and courage of those who did not. (If I may digress for a moment, I do need to get something off of my chest. I am tired of hearing about people who “beat” Disease X. This is rather arrogant when you think about it. Although I will be the first to agree that the right mental outlook is a critical part of healing, healing is not strictly something that the sick person chose to do. Wouldn’t everybody just choose to get better if that were the case? How disrespectful a view is that to those who did not make it? Many tough, very positive, hopeful people bravely fought against the ravages of the disease to which they ultimately succumbed. Were they any less valiant? Should they be held in less esteem? We will all die someday. Those of us who follow sports have doubtless heard a broadcaster casually let slip the phrase, “Father Time is undefeated.” when discussing an aging athlete who has lost a little bit of zip. Is it any less true for life in general? In many cases, I find the person who was brave and dignified to the end even more inspiring than those who lived. To say that “I beat fill-in-the-blank” betrays such a sense of entitlement, I don’t have words. You didn’t “beat it”. You survived. Thank God. Now show some respect to those who didn’t survive, and to those who are still ill, and graciously live the life you’ve been granted to the fullest. End rant.) Regardless of the outcome, each type of story has a beginning, a middle, and an end. The “chronically ill” are perpetually stuck in Act II. I do see that as working against the “chronically ill”. There is often an up swell of support at the very beginning. Best wishes for a return to health, an offer to drive them to the store, a bouquet of flowers.
Likewise, in an acute crisis, a car accident, a surgery, a diagnosis of a few months to live, the support is there. The network of supporters is thrown into crisis mode and mobilized for a short, sustainable burst.
But as the pages of the calendar flip for the “chronically ill”, as the days turn into months and then into years, this initial support wanes or the network that initially stepped up can’t keep up with the demands over long periods of time. Most friends have gone on with their lives. The “chronically ill” are still just that, chronically ill. Their illness has become a new normal, and it’s a normalcy that far too frequently means being alone. I think one of the big reasons that people don’t help the “chronically ill” is because they have become numb to their plight. It is status quo. It’s horrible, but it’s horrible in the sense that conflict in the Middle East is horrible: the problem is perpetual, insurmountable, and there is nothing I can do to help. Why bother?
Well there is something you can do. If you know someone who is “chronically ill”, do something to improve their quality of life. I know you care, but show them that you care. Try to understand their illness. Even if you don’t understand the science behind it, just understand that they are very sick. The “chronically ill” were just like you and me before their illness. They are the same person after the onset of illness. Many are people like my wife. People who exceled in engineering school, and visited four continents on their own. They didn’t choose to lose everything: jobs, careers, families, friends, houses, bank accounts, independence, and most of all dreams so that they could lie in bed all day. Contact them (but respectfully…they are often too sick to speak for extended periods) and ask them what would really help. You would do it for them if they had a disease that you knew of. Why don’t you do it now?
It’s not my problem:
Even if you believe your friend is sick, even if you understand their illness and have compassion for their chronic condition, this might be what’s holding you back. The thought that it is not your problem. It’s the close cousin of the old social dilemma. You want to help, but you can think of a million reasons why not to. I’m not family. I’m not her best friend. I have a lot on my plate. I don’t have any money. I can’t help everybody. Any reason that somebody can come up with to rationalize their inaction suddenly comes to the surface. However, when you step back, that’s what it is: rationalizing behavior.
It’s like seeing a homeless man right in front of a deli and having five extra dollars in your pocket.
“It’s not my responsibility, why bother?”
“What if somebody I know sees me?"
“I don’t have time."
“What if he’s a weirdo or something?"
“He’s probably a drug addict. It’s his fault.”
“I could put that $5 towards the rent.”
“Who do you think you are, some kind of neighborhood do-gooder?”
“What am I going to do, help everybody?”
And so on and so forth. But at the end of the day, we all know what the right thing to do is.
All it takes is a few simple steps: walk into the deli, buy a turkey sandwich (seriously, you were going to spend that $5 on something stupid like an overpriced ice coffee anyway), and hand it to the man. It’d take about 4 minutes.
The suffering that the “chronically ill” endure is very real, whether we have a name for it or not. Many, if not most, of the “chronically ill” suffer in silence and they suffer alone. This lack of respect drives many to suicide. Just a few weeks ago, I know of someone who did commit suicide. One can only imagine not just the physical pain this person withstood, but the mental anguish that drove them to despair. Simple steps, the foremost being to treat the chronically ill with the respect and dignity they deserve, truly can save lives. It’s as simple as buying a turkey sandwich.
So that is why I think the chronically ill do not get the outpouring of support and respect that many other patients receive. That’s not to say that there is zero support, there are some loyal friends and family who have stood by the “chronically ill”, and those people are appreciated more than words can say. But I think for many, the lack of action is a complicated interaction between these reasons. I’d be interested to hear what others might say in the comment section.
Disclaimer #2: I use the term “chronically ill” throughout this and other posts, but I am not sure if I am using it correctly. Psoriasis is a chronic illness. I have psoriasis. It’s not disabling (at least mine isn’t.) By chronically ill, I mean those people who suffer from disabling, debilitating, often times invisible illnesses which may or may not be recognized by the medical system. These illnesses include, but are not limited to, Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, Multiple Chemical Sensitivities, Fluoroquinolone Toxicity, Chronic Lyme, Mold Toxicity, Sarcoidosis, POTS, et cetera. To differentiate between these diseases and other well-known chronic illnesses, I will place the term in quotation marks. If anybody has any suggestions for a better term, please let me know.
Sorry I haven’t posted in so long. In addition to all the ordinary excuses one might have for not writing, the bell has been ringing far too frequently of late.
One of the things that a caregiver for the “chronically ill”, or the “chronically ill” themselves, often comes up against is the lack of material and emotional support from the medical establishment and society as a whole. Sadly, this lack of support often extends to friends and family. This has been on the forefront of my mind lately.
The question I ask is why?
Why are the “chronically ill” separated from society? Why is their suffering viewed as unequal to those who suffer from other illnesses? Why are they deemed unworthy of respect and support? Why aren’t they held in the high esteem that they should be? Why don’t we look at them as the inspirational role models that they are? Why have we forgotten about the “chronically ill”?
I often ask myself these questions and try to rationalize the response (or lack thereof) to my wife’s illness.
The most obvious reason why this phenomenon might be witnessed is that people just don’t care. Fortunately, I’m not yet so cynical as to be able to accept this hypothesis. If you were told that your mother had breast cancer, you would care. Not only would you care, you would take action. Look around. The news is replete with examples of extraordinary compassion towards very sick people. You can’t turn around without being forwarded information about a fundraiser for someone who needs a kidney transplant or seeing a 5k walk to raise awareness for breast cancer.
So people do care. If you have the empathy and ability to care (which you do as evidenced by the first example), it then follows that if you knew that a loved one had a debilitating illness that largely prevented them from living their life, you would also do everything humanly possible to help, regardless of what that illness was.
So why don’t you? I can come up with a few possible reasons why people don’t take action.
People don’t believe the “chronically ill” are sick unless their disability is visible or has a name they are familiar with:
I think this, unfortunately, might be the biggest obstacle the “chronically ill” need to overcome. More unfortunately, I think a lot of this has to do with the current broken state of our medical system. Many conventional doctors don’t acknowledge a lot of chronic illnesses. In turn, many people, who for some reason forget that doctor error is the third leading cause of death in America, place absolute faith and trust in doctors. If doctors can’t find anything wrong, then nothing must be wrong.
This is deplorable on so many levels. First of all, the absolute lack of compassion the medical community has for some of the sickest members of society is astonishing. I’ve said it before and I’ll say it again, I know people with Stage 3 cancer who are more functional and have a higher quality of life than my wife, who was diagnosed with something you’ve never heard of, and that was only after visiting dozens of doctors. I know people who are just as sick as my wife who have no official diagnosis. The lack of respect that most conventional doctors show to these people is absolutely inhumane. And it needs to be said that women who suffer from chronic illness are treated even worse. The next doctor who rolls his eyes at my wife and says, “It sounds like you’re just stressed and need to relax more.” is going to have an extremely angry Marine coming across the exam room at him (in fact, I think one already did…) This initial insult is compounded by a society which then discards these people who are among the most vulnerable in our nation.
Why is this? In my opinion, it’s at least partly because our medical system is run by the insurance and pharmaceutical companies. As a quick, possibly over-simplified example, the insurance code (the little numbers you’ve all probably seen on the Explanation of Benefits you get from your health care provider) for Glucocorticoid Deficiency is 255.41. In most cases, to receive that diagnosis, you need full blown Addison’s Disease, which means that certain approved clinical tests need to show that your adrenal glands have lost a certain percentage of their function, or your blood cortisol levels need to drop dangerously low. Do you know what the code is if your adrenal glands are significantly impaired, but the exact number on the blood test you took that day isn’t below the established threshold value? There is none. Therefore, in the eyes of the American medical system, you are not sick. I guarantee you, however, that you ain’t gonna feel too hot if your cortisol levels are only 1 nmol/l above the threshold value.
In other cases, our system focuses on conditions that can be “cured” with a pill (the fact that many of these pills cause a lot of the conditions that the “chronically ill” suffer from is a whole ‘nuther blog post. Or maybe about 12 other blog posts…) There is no prescription you can take that effectively cures chronic fatigue or the host of other invisible illnesses that the “chronically ill” suffer from. You can call me a cynic, but after five years of caring for my very sick wife and taking her to doctor after doctor, I can tell you that if the pharmaceutical companies can’t make money at it, they aren’t that interested in your condition. And it’s not some grand conspiracy. People aren’t getting together in secret meetings in corporate boardrooms trying to “keep the man down” or anything. It’s just business. Chemo has a return on investment. Preventative medicine does not. It’s that simple.
This has real world implications. It’s not just that this attitude is disrespectful to the sick among us. This attitude prevents many “chronically ill” from getting the medical attention they need and deserve. It also prevents many, if not most, of the “chronically ill” from receiving any disability compensation. Many extremely sick people, who do not have an “official” diagnosis are denied disability claims and are told they are making everything up for financial gain. This insult is compounded when they see so many people getting by on insurance scams. Why does nobody question the cop on full disability with the “undetermined back injury” while at the same time they look down their nose at those with chronic fatigue or an illness of toxicity? How is the double-standard acceptable in our society? So many sick people have to drag themselves to work until they ultimately can no longer do it and have to rely on the support of friends and family. Many of those without the support of friends and family then end up homeless and many resort to suicide. It is unacceptable that this happens in a civilized society.
So what can you do? Just believe your family member/ friend/ co-worker. Show them the same respect and courtesy you would show to somebody who had an “officially recognized” illness. Your best friend whom you’ve known since grade school didn’t suddenly lose their mind and decide to drop out of society. They are truly sick. Help them the way you would help them if you were told they had any other illness.
People don’t understand “chronic illness”:
This is closely related to the first issue. “Chronic illnesses” usually don’t have a tidy label that can be affixed to them. If I were to say, so-and-so has, let’s say ALS, it would immediately register in your brain that so-and-so were quite ill and possibly in grave danger. You would spring into action to help. I can’t do that with my wife. People ask me what’s wrong with her, and it’s very difficult to explain. She suffers from multiple conditions which have a complex interaction with each other which lead to her being disabled. When I try to explain, people often get nervous, and awkwardly end the conversation. I can’t sum it up in one word.
But why should I have to?
I don’t have to tell people, “Well, there’s a possible genetic pre-disposition, but more than likely, after decades of being subjected to environmental toxins, certain cells within my mother’s lungs have mutated, making them unresponsive to normal biochemical signals, and they have started reproducing at an abnormal rate…” I just need to say, “My mother has lung cancer.” End of story. The response is immediate and universal: “That’s terrible. I’m so sorry. Is there anything I can do to help?”
Why such the marked difference? Is it really all in the name?
The “chronically ill” should not have to give a doctoral thesis every time they try to explain their sickness. People who already feel terrible should not have to justify and prove the fact that they feel terrible. It’s not right that they are treated this way.
So how can you help? Again, just show some basic respect and trust your “chronically ill” loved one or patient. It’s very closely related to the first point, but when somebody tells you that they feel very sick, and they have obviously, uncharacteristically given up much (say lost a job) due to this illness, just treat them with basic dignity and understand that they are very sick, and see what you could do to help. Helping a person who often barely has the energy to get out of bed with some basic chores, or even just visiting on a good day could really make a difference.
Another way you can help is by watching videos or reading websites about your friend’s illness to educate yourself. Many “chronically ill” people post items about their illness on social media sites to raise awareness for their condition. Just liking a post, or better yet sharing it, helps the “chronically ill” to know that people are interested in learning about their condition. It sounds simple and silly, but it really means the world to a lot of “chronically ill” people just to know that others care. And who knows, you may even help yourself or your family in the process. One thing I’ve learned is that the “chronically ill” are the canaries in the coalmine. Many of their conditions are caused by toxicity, and they have learned a lot of important information about how to protect themselves from toxins. Why should that matter to you? Because the things that are toxic to the chronically ill are also toxic to you. The dose just hasn’t gotten high enough to affect you yet. Most of us won’t get the early warning that the “chronically ill” get. For us, it will be too late.
Also, medical bills for the “chronically ill” are often astronomical because many have lost their jobs and in many cases, insurance doesn’t cover their treatment because they “aren’t sick” (see Point #1). See if they need a fundraiser to help out. If you were out at a bar, and somebody was raising money for some random person you’ve never met to get chemo, you’d pitch in $5 no questions asked. Why wouldn’t you do at least as much, for somebody you know, whose medical expenses aren’t covered by insurance, which often amount to several thousand dollars a year?
The root of the word itself:
I think that even if you believe and understand the gravity of the situation, this might be the chain that is holding people back from action. Terminal illnesses are just that. They have an end. Chronic illnesses do not. They drag on. And on and on and on. It takes a special type of person to step up to the challenges of a chronic illness. I’ve often compared it to running. Anybody can sprint to the finish line. It takes uncommon endurance to complete a marathon.
The stories that we turn to for inspiration follow one of two templates. They either have happy endings (person gets sick, person gets better, person lives happily ever after) or they are tragedies (person gets sick, person struggles bravely, person dies). These are the two models of illness that our society has set up as inspirational. We are either inspired by the hope and determination of those who survive or by the love and courage of those who did not. (If I may digress for a moment, I do need to get something off of my chest. I am tired of hearing about people who “beat” Disease X. This is rather arrogant when you think about it. Although I will be the first to agree that the right mental outlook is a critical part of healing, healing is not strictly something that the sick person chose to do. Wouldn’t everybody just choose to get better if that were the case? How disrespectful a view is that to those who did not make it? Many tough, very positive, hopeful people bravely fought against the ravages of the disease to which they ultimately succumbed. Were they any less valiant? Should they be held in less esteem? We will all die someday. Those of us who follow sports have doubtless heard a broadcaster casually let slip the phrase, “Father Time is undefeated.” when discussing an aging athlete who has lost a little bit of zip. Is it any less true for life in general? In many cases, I find the person who was brave and dignified to the end even more inspiring than those who lived. To say that “I beat fill-in-the-blank” betrays such a sense of entitlement, I don’t have words. You didn’t “beat it”. You survived. Thank God. Now show some respect to those who didn’t survive, and to those who are still ill, and graciously live the life you’ve been granted to the fullest. End rant.) Regardless of the outcome, each type of story has a beginning, a middle, and an end. The “chronically ill” are perpetually stuck in Act II. I do see that as working against the “chronically ill”. There is often an up swell of support at the very beginning. Best wishes for a return to health, an offer to drive them to the store, a bouquet of flowers.
Likewise, in an acute crisis, a car accident, a surgery, a diagnosis of a few months to live, the support is there. The network of supporters is thrown into crisis mode and mobilized for a short, sustainable burst.
But as the pages of the calendar flip for the “chronically ill”, as the days turn into months and then into years, this initial support wanes or the network that initially stepped up can’t keep up with the demands over long periods of time. Most friends have gone on with their lives. The “chronically ill” are still just that, chronically ill. Their illness has become a new normal, and it’s a normalcy that far too frequently means being alone. I think one of the big reasons that people don’t help the “chronically ill” is because they have become numb to their plight. It is status quo. It’s horrible, but it’s horrible in the sense that conflict in the Middle East is horrible: the problem is perpetual, insurmountable, and there is nothing I can do to help. Why bother?
Well there is something you can do. If you know someone who is “chronically ill”, do something to improve their quality of life. I know you care, but show them that you care. Try to understand their illness. Even if you don’t understand the science behind it, just understand that they are very sick. The “chronically ill” were just like you and me before their illness. They are the same person after the onset of illness. Many are people like my wife. People who exceled in engineering school, and visited four continents on their own. They didn’t choose to lose everything: jobs, careers, families, friends, houses, bank accounts, independence, and most of all dreams so that they could lie in bed all day. Contact them (but respectfully…they are often too sick to speak for extended periods) and ask them what would really help. You would do it for them if they had a disease that you knew of. Why don’t you do it now?
It’s not my problem:
Even if you believe your friend is sick, even if you understand their illness and have compassion for their chronic condition, this might be what’s holding you back. The thought that it is not your problem. It’s the close cousin of the old social dilemma. You want to help, but you can think of a million reasons why not to. I’m not family. I’m not her best friend. I have a lot on my plate. I don’t have any money. I can’t help everybody. Any reason that somebody can come up with to rationalize their inaction suddenly comes to the surface. However, when you step back, that’s what it is: rationalizing behavior.
It’s like seeing a homeless man right in front of a deli and having five extra dollars in your pocket.
“It’s not my responsibility, why bother?”
“What if somebody I know sees me?"
“I don’t have time."
“What if he’s a weirdo or something?"
“He’s probably a drug addict. It’s his fault.”
“I could put that $5 towards the rent.”
“Who do you think you are, some kind of neighborhood do-gooder?”
“What am I going to do, help everybody?”
And so on and so forth. But at the end of the day, we all know what the right thing to do is.
All it takes is a few simple steps: walk into the deli, buy a turkey sandwich (seriously, you were going to spend that $5 on something stupid like an overpriced ice coffee anyway), and hand it to the man. It’d take about 4 minutes.
The suffering that the “chronically ill” endure is very real, whether we have a name for it or not. Many, if not most, of the “chronically ill” suffer in silence and they suffer alone. This lack of respect drives many to suicide. Just a few weeks ago, I know of someone who did commit suicide. One can only imagine not just the physical pain this person withstood, but the mental anguish that drove them to despair. Simple steps, the foremost being to treat the chronically ill with the respect and dignity they deserve, truly can save lives. It’s as simple as buying a turkey sandwich.
So that is why I think the chronically ill do not get the outpouring of support and respect that many other patients receive. That’s not to say that there is zero support, there are some loyal friends and family who have stood by the “chronically ill”, and those people are appreciated more than words can say. But I think for many, the lack of action is a complicated interaction between these reasons. I’d be interested to hear what others might say in the comment section.
