How to Tell People About Your Life and How You Can"t Work Due to Chronic Invisible Illness
This discussion comes up every time someone asks you "What do you do" or every time a person with invisible illness describes his or her life.
The conversation often becomes weird and strained, but that's to be expected, given that the person's real illness is not being recognized.
For example, imagine a cancer patient if cancer were not recognized as a "real disease" and people kept asking why the person had lost his or her hair and was falling behind at work.
Imagine someone with type 1 diabetes who was told they just needed to drink less water and they would be fine.
Injustices of this sort happen every day to people with invisible illness, because as in these hypothetical cases, misunderstanding and invalidation occur when people are unaware of the reality of a disease.
However, being straightforward and just saying what comes to mind is not always the way to go, because of a few factors: -Listeners might have a hard time understanding how much invisible illness can affect a person's abilities, including mental and emotional abilities.
This society seems to think that the body cannot influence the brain; only the brain can influence the body.
-Between psychiatric ideas about psychosomatic illness, "memes" about people who just thought they were sick but they needed to get out more, and propaganda about CFS and fibromyalgia being "yuppie" illnesses that are purely "psychological," people might be primed to think that invisible illnesses are not "real" diseases.
-There might be communication difficulties.
"Fatigue" means different things to different people.
"Irritability" can range from snapping at someone to kicking a hole in the door.
-After being in an illness support community, the sick person might incorrectly assume that healthy outsiders are aware of the basic assumptions and knowledge shared by everyone in the illness community.
-Lastly, dynamics with people close to oneself (family, friends, partners) can be intense and fraught.
These people might be directly affected by one's symptoms and inabilities, and you deal with them often so their attitudes toward you will affect you and perhaps your recovery.
Thus, it is especially important to communicate effectively with these people, for your well-being and theirs.
-DON'T say "I can't work because of illness " when someone in public you don't know well asks "What do you do?" This is like a very bad chess move.
What are people supposed to say to it, except for "That's a bummer" or "Explain this to me, since you look fine to me.
" Then the conversation becomes about how your life is depressing or about defending your assertion that you can't work despite the fact that you look alright.
This conversation will not go well, because people who have not been touched by invisible illness tend to have a hard time understanding that someone could be physically able to get dressed and leave the house on one occasion but not be able to do productive work in a regular job.
-DO have a quick answer for whenever someone asks you "What do you do?" People don't really care how you fund your living expenses (or if they do they are weird).
Instead, they are probably asking, "Let's talk about you" or "What type of person are you?" or "What might we have in common?" Unless they are going to ask a lot of details, they don't even need to know that you don't make money.
You could spin your life however you want.
Some snappy answers: -I have _(chronic illness)_ and treating it takes a lot of time, and it took me a lot of energy to make it to this _(party/event/outing)_ but I am glad to be seeing some other people and enjoying myself here.
-I was doing great in life with X and Y, but then I got felled by this awful disease and now it's all I can do to make it out a few times a week like this.
But I'm still interested in Z.
-Well, the last time I was able to work I was a _(career)_, but due to unpredictable health I have not been able to work since _(time)_, but I am still interested in _(topic)_.
-Oh, I'm a _(career)_.
I have to work (from home/part time) and I can't take on too much because I have a chronic illness, but I still manage to do something.
-DON'T explain exactly why you can't work.
The reasons might not make sense to the listener, and if you mention any cognitive or nervous system symptoms, you might make yourself look even weirder (Many people have a hard time believing that illness can affect the brain nervous system, since we tend to think that these things are "us" and not our bodies).
Also, offering specific reasons why you can't work (hard to leave the house, hard to concentrate) triggers some people into wanting to solve your problem by thinking of creative ways to get around your limitations.
For example: A: I can't work because I can't leave the house.
B: But could you work from home? A: No, I'm too tired and I can't concentrate.
B: But couldn't you do a mindless job? A: No, I don't know of any such jobs that aren't scams that I could obtain and hold without being fired.
B: But you're talking to me now, so you could talk on the phone? A: Forget it, this is going nowhere.
-DO explain that many tasks which are easier than work are prohibitively hard for you.
When trying to explain your situation to someone who needs to know, like a friend or family member, you might mention if you have a hard time: leaving the house, driving, bathing, cooking, standing up, etc.
This shows the person that you are already pushing yourself in your life as it is.
Just because it would take no effort for THEM to live as you are living (not working) doesn't mean that it does not take substantial effort for YOU to live as you are living (if you are doing any self-care, treatment research, anything around the house, etc.
).
Dr.
Larry Sharp of Fort Worth, TX uses an excellent fatigue questionnaire for assessing fatigue in his patients.
Instead of just asking "How tired are you from 1 to 10" it asked how often fatigue interferes with doing a variety of activities.
It was shocking to see it there on paper how much fatigue was affecting my ability to do very basic activities.
If anyone questions the level of your illness and fatigue, you might make a chart for them showing from 1 to 5 or 1 to 10 how often your symptoms interfere with each of a few dozen daily activities.
-DO explain how you already do many things that are a challenge for you.
Maybe the listener doesn't realize that you are already pushing yourself quite a lot.
You could mention: -Merely talking with you right now is a challenge for me and I will need to rest afterward.
-Doing my own treatment research and managing my treatment is more than I think I can do, but I am doing it because no one else can do it for me.
-I don't feel up to traveling or cooking, but I do them anyway because I have to go to appointments, eat, etc.
-DON'T assume that your life will make sense to other people the way it makes sense to you.
You might have had your chronic illness for years and you might be used to it.
But things you see as no big deal might seem awful to someone who is hearing about them for the first time.
Even with family or friends who see you often, don't assume that they will understand how certain symptoms aren't a big deal to you OR that certain issues are much worse than they sound.
-DO make it clear that besides the parts you can't change, your life is alright, and you are handling things well.
Even if you feel sick much of the time, can't work, miss out on things, and so forth, you still might be handling your situation in a nearly optimal way.
It's a fallacy to think that if someone's life is bad, they must be doing something wrong.
Sometimes situations are simply hard.
Outsiders might not realize how your efforts are already making your life much better than it could be.
You might want to make a comparison: If not for X or Y that I am doing, I might be in a worse situation.
-DON'T participate the power dynamic in which the well person is supposed to give advice to the person with invisible illness.
In the past, if someone asked, "Are you getting out enough?" or "I think you should be doing X," I would try to defend myself, saying, "I'm already doing something similar to that," or "You know you're right, I should do that more.
" I took a deferential position, as though they knew what they were talking about and I didn't.
If things were going well for them but not for me, I should listen to their advice, right? Wrong.
It's a common misperception that well people can and should offer advice to sick people.
Being well does not necessarily mean that a person is doing things well in their life; nor does being sick imply that a person is making bad choices.
If a person's life is hard or if they are unhealthy, it does not necessarily mean they are doing anything wrong.
Perhaps they were simply unfortunate.
-DO (perhaps) forestall judgment by anticipating it.
If you say early in the encounter, "I know it has to seem to you like I'm not making enough of my life or not getting out enough, but I'm truly doing what's best for me and the most I can do," then the listener might give pause before suggesting the very idea you've just said is not true.
Sometimes, this will even prompt the listener to relieve your fears that they think badly of you.
They might respond, "Of course I don't think that! I actually think you're doing a great job and I'm impressed.
" -DO compare your situation favorably to how things used to be or how things would be.
This makes it into a success story: "I had this problem or was in danger of experiencing these bad things, but then I used my ingenuity or was blessed with fortunate circumstances that make my life much better.
" A success story is usually a good piece of conversation ("Oh, that's wonderful,") or else a conversation-ender, since the problem is already solved and contained.
Either way, portraying your current life as a success story helps you to avoid unwanted advice.
For example: -I used to have no idea what was wrong with me, but then I got a diagnosis.
-I used to be very isolated by illness, but then I joined support groups and started keeping up with old friends.
-And a good one for closing: I used to feel bad when people thought I should work or get out more, but then I read this article and now I can respond with confidence.
"
The conversation often becomes weird and strained, but that's to be expected, given that the person's real illness is not being recognized.
For example, imagine a cancer patient if cancer were not recognized as a "real disease" and people kept asking why the person had lost his or her hair and was falling behind at work.
Imagine someone with type 1 diabetes who was told they just needed to drink less water and they would be fine.
Injustices of this sort happen every day to people with invisible illness, because as in these hypothetical cases, misunderstanding and invalidation occur when people are unaware of the reality of a disease.
However, being straightforward and just saying what comes to mind is not always the way to go, because of a few factors: -Listeners might have a hard time understanding how much invisible illness can affect a person's abilities, including mental and emotional abilities.
This society seems to think that the body cannot influence the brain; only the brain can influence the body.
-Between psychiatric ideas about psychosomatic illness, "memes" about people who just thought they were sick but they needed to get out more, and propaganda about CFS and fibromyalgia being "yuppie" illnesses that are purely "psychological," people might be primed to think that invisible illnesses are not "real" diseases.
-There might be communication difficulties.
"Fatigue" means different things to different people.
"Irritability" can range from snapping at someone to kicking a hole in the door.
-After being in an illness support community, the sick person might incorrectly assume that healthy outsiders are aware of the basic assumptions and knowledge shared by everyone in the illness community.
-Lastly, dynamics with people close to oneself (family, friends, partners) can be intense and fraught.
These people might be directly affected by one's symptoms and inabilities, and you deal with them often so their attitudes toward you will affect you and perhaps your recovery.
Thus, it is especially important to communicate effectively with these people, for your well-being and theirs.
-DON'T say "I can't work because of illness " when someone in public you don't know well asks "What do you do?" This is like a very bad chess move.
What are people supposed to say to it, except for "That's a bummer" or "Explain this to me, since you look fine to me.
" Then the conversation becomes about how your life is depressing or about defending your assertion that you can't work despite the fact that you look alright.
This conversation will not go well, because people who have not been touched by invisible illness tend to have a hard time understanding that someone could be physically able to get dressed and leave the house on one occasion but not be able to do productive work in a regular job.
-DO have a quick answer for whenever someone asks you "What do you do?" People don't really care how you fund your living expenses (or if they do they are weird).
Instead, they are probably asking, "Let's talk about you" or "What type of person are you?" or "What might we have in common?" Unless they are going to ask a lot of details, they don't even need to know that you don't make money.
You could spin your life however you want.
Some snappy answers: -I have _(chronic illness)_ and treating it takes a lot of time, and it took me a lot of energy to make it to this _(party/event/outing)_ but I am glad to be seeing some other people and enjoying myself here.
-I was doing great in life with X and Y, but then I got felled by this awful disease and now it's all I can do to make it out a few times a week like this.
But I'm still interested in Z.
-Well, the last time I was able to work I was a _(career)_, but due to unpredictable health I have not been able to work since _(time)_, but I am still interested in _(topic)_.
-Oh, I'm a _(career)_.
I have to work (from home/part time) and I can't take on too much because I have a chronic illness, but I still manage to do something.
-DON'T explain exactly why you can't work.
The reasons might not make sense to the listener, and if you mention any cognitive or nervous system symptoms, you might make yourself look even weirder (Many people have a hard time believing that illness can affect the brain nervous system, since we tend to think that these things are "us" and not our bodies).
Also, offering specific reasons why you can't work (hard to leave the house, hard to concentrate) triggers some people into wanting to solve your problem by thinking of creative ways to get around your limitations.
For example: A: I can't work because I can't leave the house.
B: But could you work from home? A: No, I'm too tired and I can't concentrate.
B: But couldn't you do a mindless job? A: No, I don't know of any such jobs that aren't scams that I could obtain and hold without being fired.
B: But you're talking to me now, so you could talk on the phone? A: Forget it, this is going nowhere.
-DO explain that many tasks which are easier than work are prohibitively hard for you.
When trying to explain your situation to someone who needs to know, like a friend or family member, you might mention if you have a hard time: leaving the house, driving, bathing, cooking, standing up, etc.
This shows the person that you are already pushing yourself in your life as it is.
Just because it would take no effort for THEM to live as you are living (not working) doesn't mean that it does not take substantial effort for YOU to live as you are living (if you are doing any self-care, treatment research, anything around the house, etc.
).
Dr.
Larry Sharp of Fort Worth, TX uses an excellent fatigue questionnaire for assessing fatigue in his patients.
Instead of just asking "How tired are you from 1 to 10" it asked how often fatigue interferes with doing a variety of activities.
It was shocking to see it there on paper how much fatigue was affecting my ability to do very basic activities.
If anyone questions the level of your illness and fatigue, you might make a chart for them showing from 1 to 5 or 1 to 10 how often your symptoms interfere with each of a few dozen daily activities.
-DO explain how you already do many things that are a challenge for you.
Maybe the listener doesn't realize that you are already pushing yourself quite a lot.
You could mention: -Merely talking with you right now is a challenge for me and I will need to rest afterward.
-Doing my own treatment research and managing my treatment is more than I think I can do, but I am doing it because no one else can do it for me.
-I don't feel up to traveling or cooking, but I do them anyway because I have to go to appointments, eat, etc.
-DON'T assume that your life will make sense to other people the way it makes sense to you.
You might have had your chronic illness for years and you might be used to it.
But things you see as no big deal might seem awful to someone who is hearing about them for the first time.
Even with family or friends who see you often, don't assume that they will understand how certain symptoms aren't a big deal to you OR that certain issues are much worse than they sound.
-DO make it clear that besides the parts you can't change, your life is alright, and you are handling things well.
Even if you feel sick much of the time, can't work, miss out on things, and so forth, you still might be handling your situation in a nearly optimal way.
It's a fallacy to think that if someone's life is bad, they must be doing something wrong.
Sometimes situations are simply hard.
Outsiders might not realize how your efforts are already making your life much better than it could be.
You might want to make a comparison: If not for X or Y that I am doing, I might be in a worse situation.
-DON'T participate the power dynamic in which the well person is supposed to give advice to the person with invisible illness.
In the past, if someone asked, "Are you getting out enough?" or "I think you should be doing X," I would try to defend myself, saying, "I'm already doing something similar to that," or "You know you're right, I should do that more.
" I took a deferential position, as though they knew what they were talking about and I didn't.
If things were going well for them but not for me, I should listen to their advice, right? Wrong.
It's a common misperception that well people can and should offer advice to sick people.
Being well does not necessarily mean that a person is doing things well in their life; nor does being sick imply that a person is making bad choices.
If a person's life is hard or if they are unhealthy, it does not necessarily mean they are doing anything wrong.
Perhaps they were simply unfortunate.
-DO (perhaps) forestall judgment by anticipating it.
If you say early in the encounter, "I know it has to seem to you like I'm not making enough of my life or not getting out enough, but I'm truly doing what's best for me and the most I can do," then the listener might give pause before suggesting the very idea you've just said is not true.
Sometimes, this will even prompt the listener to relieve your fears that they think badly of you.
They might respond, "Of course I don't think that! I actually think you're doing a great job and I'm impressed.
" -DO compare your situation favorably to how things used to be or how things would be.
This makes it into a success story: "I had this problem or was in danger of experiencing these bad things, but then I used my ingenuity or was blessed with fortunate circumstances that make my life much better.
" A success story is usually a good piece of conversation ("Oh, that's wonderful,") or else a conversation-ender, since the problem is already solved and contained.
Either way, portraying your current life as a success story helps you to avoid unwanted advice.
For example: -I used to have no idea what was wrong with me, but then I got a diagnosis.
-I used to be very isolated by illness, but then I joined support groups and started keeping up with old friends.
-And a good one for closing: I used to feel bad when people thought I should work or get out more, but then I read this article and now I can respond with confidence.
"