After the heck of a time I have had lately with family and friends (especially my husband) I researched "letters" people have posted on the net about their issues- there are actually not many. It seems most have given up trying to explain while others of us just can't get through to others. The letters that people posted, letters I could find I read and used as inspiration. If I used anything of anyone else's I am sorry but did not copy any letters and am working from my befuddled memory.
If you find yourself in need of help to explain what is going on with your health feel free to copy and customize to use for yourself.-
I am not sick; I have multiple illnesses not a sickness such as a cold or the flu. What I have is not contagious and is currently not curable.
I am STILL ME! I have feelings and deserve to be treated with kindness and the courtesy that others are shown and expect.
Don’t feel sorry FOR me, but put yourself in my place and imagine what my day is like. Because I may be able to do something one day but not the next, does not mean I am being lazy or slacking on life’s duties. If I cannot do something I am not happy about it, it is frustrating and depressing, but something that I have to live with.
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because others can’t see the changes doesn’t mean they aren’t real. I can’t even assume that my friends or family will understand how certain symptoms are a big deal to me OR that certain issues are much worse than they sound. Especially symptoms that cannot be seen (such as severe diarrhea, throwing up all night or the fact that I will fall down with no warning.) Many do not understand that walking with a cane makes me feel more in control BUT embarrasses me very much. It is no fun to hear comments often, such as one from a 5 yr old loudly asking why “Does THAT Lady have a cane, she’s not even OLD”
I know it has to seem to many 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 at the time. I do NOT WANT to be like this, but sometimes this is the best that I have to work with.
Just the simple fact I get out of bed in the morning, plus trying to keep up with the chores, taking care of the children, etc. should already prove that I am pushing myself in my life as it is. Just because it would take no effort for OTHERS to live as they are living (not working must seem like a Dream to so many others, where EVERY day is work to me and I do not get a day off or vacation time or even get the weekends off) It doesn’t mean that it does not take substantial effort for ME to live as OTHERS are living (I do a lot of treatment research, participate in surveys and studies on line because I can sort of SIT and do so) Most people with the illnesses that I have cannot do anything out and about or even around the house, (personally I fear taking a shorter when home along due to falling down) etc. I FEAR the day that I get to the point it's not safe for me to be alone , and I fear it is coming sooner rather than later. I can hardly buy my medication and feed me kids. I don't know how I could hire help. I am on disability because I already cannot hold a job, I physically cannot do what needs done, I throw up in front of clients, I spend a great deal of time in the bathroom, etc.
No one wants to be seen as only a burden, especially by their spouse. I want to have a future with my spouse, but I no longer know if he sees a future with me. My best friend is the man I love and we have little communication now and I feel that he is mad at me all the time, to the point that I have to keep asking him if he is mad and what have I done wrong. (Normally I have not kept the house clean enough or appear to be sitting too much)
Maybe he wants to move on and possibly meet another woman. We went through that and I will forever have a hole in my heart and will be constantly be wondering if he is looking for my “replacement” (What happened to “in sickness and in health” the response was "But I didn't sign up for this")
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually miss-informed.
For those who care to understand …
These are some of 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 with friends and family I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about my family and friends, and most of the time I’d still like to hear others talk about their family, friends, and activities.
There is a 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 than 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, that would be great! But reminding me of what is wrong with me by stating “I must be better.” “Or that I sound like I am better” just makes me sad.
Please know that being able to stand up for five or ten minutes, doesn’t necessarily mean that I can stand up again, right away, for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine a runner after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph except use, “eat”, “sitting up”, “walking”, “thinking”, “being sociable” and so on instead of “Being able to stand” … 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 easily walk to the bathroom and back, while the next day I’ll might have trouble sitting up. BUT I do these things, because I HAVE TO (for my children and myself) 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.
NOTE: On the above statement, I MAKE myself get out of bed every day to take care of my children, they need me. No matter how much pain I am in I try to keep the house up and running, though the floor may have too many toys on it there will be a path to walk through. Due to one of my chronic Illnesses I am not allowed to take pain medication, so I literally have to work through the pain. Not an easy task. I do it because it needs to be done. I do not always rest when I should (which may make some things worse) there are nights that I cannot even pick my foot up to slid it out of the slipper. There are days that I am starving but I am also throwing up so much that it is not worth the pain that eating causes. I am exhausted but often can't sleep.
I continue to hope (but do not feel that) others 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 threw up with no notice and can’t eat for days at a time? Or had multiple points of pain that DO NOT feel better (and probably will not) for years on end?) These issues are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated it is actually often depressing – if I could possibly do it that, I would.
Imagine if you have to explain all the time that you have to sit down/lie down/take these pills now, that it needs to be done right now– it can’t be put off or forgotten just because you are 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. One of the most important parts 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.
Getting better from an illness can be very slow. Getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of whack, and functioning wrongly, that it may take a long time to sort everything out, if that even ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to please try to understand me and show me love and affection. Try not to be mad at me, but don’t feel sad for me. Help me when you can-
Edited February 16, 2013 at 10:11 am