Tarlovcyst and arachnoiditis 

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Open Letter to those w/out invisible illness

An Open Letter To Those Without Invisible Disability Or Chronic Illness Ö 
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you canít see the changes doesnít mean they arenít real. 
Most people donít 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 Ö 
Ö These are the things that I would like you to understand about me before you judge meÖ 
Please understand that being disabled/sick doesnít mean Iím 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 Iím still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time Iíd still like to hear you talk about yours too. 
Please understand the difference between ďhappyĒ and ďhealthyĒ. When youíve got the flu you probably feel miserable with it, but Iíve been sick for years. I canít be miserable all the time, in fact I work hard at not being miserable. So if youíre talking to me and I sound happy, it means Iím happy. Thatís all. I may be tired. I may be in pain. I may be sicker that ever. Please, donít say, ďOh, youíre sounding better!Ē. I am not sounding better, I am sounding happy. If you want to comment on that, youíre welcome 
Please understand that being able to stand up for five minutes, doesnít necessarily mean that I can stand up for ten minutes, or an hour. Itís quite likely that doing that five minutes has exhausted my resources and Iíll need to recover Ė imagine an athlete after a race. They couldnít repeat that feat right away either. 
Please repeat the above paragraph substituting, ďsitting upĒ, ďwalkingĒ, ďthinkingĒ, ďbeing sociableĒ and so on Ö it applies to everything that I do. 
Please understand that the effects of chronic illnesses and many disabilities are variable. Itís quite possible (for me, itís common) that one day I am able to walk to the bathroom and back, while the next day Iíll have trouble sitting up. Please donít attack me when Iím worse by saying, ďBut you did it before!Ē. If you want me to do something, ask if I can and Iíll 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 ďgetting out and doing thingsĒ does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldnít 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 Ė 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 Ė it canít be put off or forgotten just because Iím doing something else more exciting. Illnesses and disabilities do not forgive their victims easily. 
Please understand that I canít 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 youíre sick/disabled. This doesnít mean Iím not trying to get better. It doesnít mean Iíve given up. Itís just how life is when youíre dealing with a chronic illness/disability. 
If you want to suggest a cure to me, please donít. Itís not because I donít appreciate the thought; and itís not because I donít want to get well. Itís 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 weíd 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 donít expect me to rush out and try it. I might not even reply. If I havenít had it or something like it suggested before, and it sounds reasonable, Iíll 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 Ė people who are able-bodied Ė for many things. 
But most importantly, I need you to understand me.

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Last modified on 19.01.2012
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