| Myositis "Letter" |
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Unlike having cancer or being hurt in an accident, most people do not
understand even a little about chronic pain and its effects, and of those that
think they know, many are actually misinformed. In the spirit of informing those
who wish to understand... These are the things that I would like you to
understand about me before you judge me... Please understand that being sick
doesn't mean I'm not still a human being. I have to spend most of my day in
considerable pain and exhaustion, and if you visit, sometimes I probably don't
seem like much fun to be with, but I'm still me - stuck inside this body. I still worry
about my family, my friends, and most of the time - I'd still like to hear you talk
about yours, too. Please understand the difference between "happy" and
"healthy." When you've got the flu, you probably feel miserable with it, but I've
been sick for years. I can't be miserable all the time. In fact, I work hard at not
being miserable. So, if you're talking to me and I sound happy, it means I'm
happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired,
or that I'm getting better, or any of those things. Please don't say, "Oh, you're
sounding better!" or "But you look so healthy!¨ I am merely coping. I am
sounding happy and trying to look normal. If you want to comment on that,
you're welcome. Please understand that being able to stand up for ten minutes
doesn't necessarily mean that I can stand up for twenty minutes, or an hour.
Just because I managed to stand up for thirty minutes yesterday doesn't mean
that I can do the same today. With a lot of diseases you're either paralyzed, or
you can move. With this one, it gets more confusing everyday. It can be like a
yo-yo. I never know from day to day, how I am going to feel when I wake up. In
most cases, I never know from minute to minute. That is one of the hardest and
most frustrating components of chronic pain. Please repeat the above
paragraph substituting "sitting, walking, thinking, concentrating, being sociable,"
and so on. It applies to everything. That's what chronic pain does to you. Please
understand that chronic pain is variable. It's quite possible (for many, it's
common) that one day I am able to walk to the park and back, while the next day
I'll have trouble getting to the next room. Please don't attack me when I'm ill by
saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you
want me to do something, then ask if I can. In a similar vein, I may need to
cancel a previous commitment at the last minute. If this happens, please do not
take it personally. If you are able, please try to always remember how very lucky
you are - to be physically able to do all of the things that you can do. Please
understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or
how I suffer in my own private time. Telling me that I need to exercise, or do
some things to get my mind off of it may frustrate me to tears, and is not correct.
If I were capable of doing some things any or all of the time, don't you know that
I would? I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try
harder..." Obviously, chronic pain can deal with the whole body, or be localized
to specific areas. Sometimes participating in a single activity for a short or a
long period of time can cause more damage and physical pain than you could
ever imagine. Not to mention the recovery time, which can be intense. You can't
always read it on my face or in my body language. Also, chronic pain may cause
secondary depression. Wouldn't you get depressed and down if you were
hurting constantly for months or years? But it is not caused by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take
these pills now, that probably means that I do have to do it right now - it can't be
put off or forgotten just because I'm somewhere, or am right in the middle of
doing something. Chronic pain does not forgive, nor does it wait for anyone. If
you want to suggest a cure to me, please don't. It's not because I don't
appreciate the thought, and it's not because I don't want to get well. That just
isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some
cases, I have been made sicker, not better. This can involve side effects or
allergic reactions. It also includes failure, which in and of itself can make me feel
even lower. If there were something that cured, or even helped people with my
form of chronic pain, then we'd know about it. There is worldwide networking
(both on and off the Internet) between people with chronic pain. If something
worked, we would KNOW. It's definitely not for lack of trying. If, after reading this,
you still feel the need to suggest a cure, then so be it. I may take what you said
and discuss it with my doctor. If I seem touchy, it's probably because I am. It's
not how I try to be. As a matter of fact, I try very hard to be normal. I hope you
will try to understand. I have been, and am still, going through a lot. Chronic
pain is hard for you to understand unless you have had it. It wreaks havoc on
the body and the mind. It is exhausting and exasperating. Almost all the time, I
know that I am doing my best to cope with this, and live my life to the best of my
ability. I ask you to bear with me, and accept me as I am. I know that you cannot
literally understand my situation unless you have been in my shoes, but as
much as is possible, I am asking you to try to be understanding in general. In
many ways I depend on you - people who are not sick. I need you to visit me
when I am too sick to go out. Sometimes I need you help me with the shopping,
cooking or cleaning. I may need you to take me to the doctor, or to the store.
You are my link to the normalcy of life. You can help me to keep in touch with
the parts of life that I miss and fully intend to undertake again, just as soon as I
am able. I know that I asked a lot from you, and I do thank you for listening. It
really does mean a lot. annonymous.
understand even a little about chronic pain and its effects, and of those that
think they know, many are actually misinformed. In the spirit of informing those
who wish to understand... These are the things that I would like you to
understand about me before you judge me... Please understand that being sick
doesn't mean I'm not still a human being. I have to spend most of my day in
considerable pain and exhaustion, and if you visit, sometimes I probably don't
seem like much fun to be with, but I'm still me - stuck inside this body. I still worry
about my family, my friends, and most of the time - I'd still like to hear you talk
about yours, too. Please understand the difference between "happy" and
"healthy." When you've got the flu, you probably feel miserable with it, but I've
been sick for years. I can't be miserable all the time. In fact, I work hard at not
being miserable. So, if you're talking to me and I sound happy, it means I'm
happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired,
or that I'm getting better, or any of those things. Please don't say, "Oh, you're
sounding better!" or "But you look so healthy!¨ I am merely coping. I am
sounding happy and trying to look normal. If you want to comment on that,
you're welcome. Please understand that being able to stand up for ten minutes
doesn't necessarily mean that I can stand up for twenty minutes, or an hour.
Just because I managed to stand up for thirty minutes yesterday doesn't mean
that I can do the same today. With a lot of diseases you're either paralyzed, or
you can move. With this one, it gets more confusing everyday. It can be like a
yo-yo. I never know from day to day, how I am going to feel when I wake up. In
most cases, I never know from minute to minute. That is one of the hardest and
most frustrating components of chronic pain. Please repeat the above
paragraph substituting "sitting, walking, thinking, concentrating, being sociable,"
and so on. It applies to everything. That's what chronic pain does to you. Please
understand that chronic pain is variable. It's quite possible (for many, it's
common) that one day I am able to walk to the park and back, while the next day
I'll have trouble getting to the next room. Please don't attack me when I'm ill by
saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you
want me to do something, then ask if I can. In a similar vein, I may need to
cancel a previous commitment at the last minute. If this happens, please do not
take it personally. If you are able, please try to always remember how very lucky
you are - to be physically able to do all of the things that you can do. Please
understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or
how I suffer in my own private time. Telling me that I need to exercise, or do
some things to get my mind off of it may frustrate me to tears, and is not correct.
If I were capable of doing some things any or all of the time, don't you know that
I would? I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try
harder..." Obviously, chronic pain can deal with the whole body, or be localized
to specific areas. Sometimes participating in a single activity for a short or a
long period of time can cause more damage and physical pain than you could
ever imagine. Not to mention the recovery time, which can be intense. You can't
always read it on my face or in my body language. Also, chronic pain may cause
secondary depression. Wouldn't you get depressed and down if you were
hurting constantly for months or years? But it is not caused by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take
these pills now, that probably means that I do have to do it right now - it can't be
put off or forgotten just because I'm somewhere, or am right in the middle of
doing something. Chronic pain does not forgive, nor does it wait for anyone. If
you want to suggest a cure to me, please don't. It's not because I don't
appreciate the thought, and it's not because I don't want to get well. That just
isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some
cases, I have been made sicker, not better. This can involve side effects or
allergic reactions. It also includes failure, which in and of itself can make me feel
even lower. If there were something that cured, or even helped people with my
form of chronic pain, then we'd know about it. There is worldwide networking
(both on and off the Internet) between people with chronic pain. If something
worked, we would KNOW. It's definitely not for lack of trying. If, after reading this,
you still feel the need to suggest a cure, then so be it. I may take what you said
and discuss it with my doctor. If I seem touchy, it's probably because I am. It's
not how I try to be. As a matter of fact, I try very hard to be normal. I hope you
will try to understand. I have been, and am still, going through a lot. Chronic
pain is hard for you to understand unless you have had it. It wreaks havoc on
the body and the mind. It is exhausting and exasperating. Almost all the time, I
know that I am doing my best to cope with this, and live my life to the best of my
ability. I ask you to bear with me, and accept me as I am. I know that you cannot
literally understand my situation unless you have been in my shoes, but as
much as is possible, I am asking you to try to be understanding in general. In
many ways I depend on you - people who are not sick. I need you to visit me
when I am too sick to go out. Sometimes I need you help me with the shopping,
cooking or cleaning. I may need you to take me to the doctor, or to the store.
You are my link to the normalcy of life. You can help me to keep in touch with
the parts of life that I miss and fully intend to undertake again, just as soon as I
am able. I know that I asked a lot from you, and I do thank you for listening. It
really does mean a lot. annonymous.
LETTER TO PEOPLE WITHOUT CHRONIC PAIN