NCC/dealing with invisible illnesses...............

[Guest guest]

HI All, The following was posted on the dysautonomia (www.NDRF.com) site and

I thought it appropriate for this site also. I sent it out to family/friends

who have trouble dealing with my " invisible illness " .....afterall you cant

see pain, dizziness, headache, fatigue etc. How many times have we all heard

" you look OK to me? " . Anyway, I hope that it helps someone.

Take care, nne

Decompression, cervical lami's/fusions May/June 00, dysautonomia and still

dizzzzzzzzy.........

Do and Don'ts!

DON'T assume that because I look well, that I feel well. Looks can be

deceiving. Some days I look great and feel horrible.

DON'T judge me. I get enough of that from others.

DON'T tell me you know how I feel. No one knows how anyone else feels. Two

people with the same disorder can feel totally different. We all have varying

thresholds of pain, and pain cannot be measured.

DON'T tell me about your Great Aunt Gertrude and her condition and how well

she managed in spite of it. I am not Aunt Gertrude and I am doing my very

best.

DON'T tell me, " It could be worse. " Yes, it could be but I don't need to be

reminded.

DON'T decide what I am capable of doing. Allow me to decide what activities I

can participate in. I still have my own mind. There may be times that I might

make the wrong decision and if I do, I'll know it soon enough.

DON'T tell me, " I told you so... "

DON'T be upset that you cannot ease my pain. It will do no good for both of

us to be miserable.

DON'T ask me how I feel unless you really want to know. You may hear a lot

more than you are prepared to listen to.

DON'T assume that because I did a certain activity yesterday that I can do it

today. This condition is ever-changing.

DON'T tell me about the latest fad " cure. " I want to be cured more than

anything, and if there is a " legitimate " cure out there, my doctor will tell

me about it.

DO learn everything you can about this condition. The more that you know, the

better equipped you will be to know what to expect.

DO realize that I am angry and frustrated with this condition, not at you.

DO let me know you are available to help me when I ask. I will be grateful

for your help - but you have to let me know you are willing before I can ask.

Do offer me lots of hugs and encouragement. Sometimes I do get lonely and sad.

Do understand why I cancel plans at the last minute. I never know from one

day to the next how I will feel. My condition is unpredictable - therefore my

life is.

DO continue to invite me to activities. Just because I am not able to bike

ride along with the gang, does not mean that I can't meet you for the picnic

at the end of the trail. Please let me decide - don't leave me out.

DO ask me directly if you want to know something about my condition. It is

best to get your information first hand than to get it through gossip.

DO call me. Just because I don't get out as much doesn't mean I don't like to

hear from you. When I run into people they always say: " I have been meaning

to call you but... " Well, I never knew that you were " meaning to call " I only

knew that you " didn't call. "

DON'T give up HOPE because I'm not...................