Open letter - re: I have a chronic illness

Discussion in 'The Watercooler' started by Star*, Jun 2, 2009.

  1. Star*

    Star* call 911

    An Open Letter To Those Without Invisible Disability Or Chronic Illness …

    Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
    Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. 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 disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and 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. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
    Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover - imagine an athlete after a race. They couldn’t repeat that feat right away either.
    Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
    Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
    Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
    Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated - if I could possibly do it that, I would.
    Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
    Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
    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. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
    If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
    Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
    I depend on you - people who are able-bodied - for many things.

    But most importantly, I need you to understand me
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Amen Sister!
  3. gcvmom

    gcvmom Here we go again!

    That's awesome! I wish I'd had it when difficult child 1 was first diagnosis'd with Crohn's and for that first year until he thankfully went in remission. We were deluged with advice, articles, books, diets, supplements, etc. from well meaning, but totally ignorant people. I learned to just nod my head and thank them for their concern. People don't understand when you don't get better after a week or two. And they get tired of hearing about it when it drags on for months or years. But it's important to know, and be reminded, that life with a chronic disorder or disability is still life, just a lot different than the one they know.
  4. flutterby

    flutterby Fly away!

  5. KTMom91

    KTMom91 Well-Known Member

    Beautifully said!
  6. Hound dog

    Hound dog Nana's are Beautiful

    Where was this 20 yrs ago??

    Well said! (and about time)
  7. totoro

    totoro Mom? What's a GFG?

    I just laid into my mother in law about her sister, she has Meniers (sp?) and has had multiple surgeries and is just a horrible extreme case.

    mother in law said to me, "I just don't know why she doesn't try harder, I mean I made a whole file cabinet just for her bills, yet they are scattered everywhere even in her bathroom"

    I said in a very sarcastic tone, "S, don't you honestly think if she could use you system she would?" "Do you really think she wants her bills and life scattered all over her house?"
    "It may seem easy to you to just simply put them in the file cabinet, but because of her illness it is just not easy for her."

    I then went into a huge explanation about how it is vital that someone has to get her medications under control, I went through each one and explained how they are making hew worse.

    Some idiot doctor has her on, Zyprexa, Wellbutrin, Prozac and another one and she is not taking them consistantly!
    All because the Doctor is tired of her "imaginary" issues.

    I should send her this...

    I then walked away.