Do's & Don'ts of Chiari ( Applies to other conditions )
Just thought I wold remind myself I am ONLY HUMAN!
1) DON’T assumeu because I look well that I feel well. Looks can be very deceiving. Many days I look great but I feel terrible.
2) DON’T tell me you know how I feel. No one knows how anyone else feels. Two people with the same condition may feel totally different.
3) DON’T forget that we all have varying thresholds of pain and pain cannot be measured.
4) DON’T tell me about your Aunt Gertrude and her Chiari and how she has managed well in spite of it. I am not Aunt Gertrude and I am doing my best.
5) DON’T tell me “it could be worse.” Yes, it could be. But, I don’t need to be reminded.
6) DON’T decide what I am capable of. Allow me to decide what activities I can participate in. There may be times that I make the wrong decision. If I do, I’ll know soon enough.
7) DON’T be upset that you cannot ease my problems. It won’t do any good for both of us to be miserable.
8) DON’T ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to hear.
9) DON’T assume that because I did an activity yesterday that I can do it today. Chiari is every-changing.
10) DO learn everything you can about the condition. The more you know, the better equipped you will be to know what to expect.
11) DO realize that I am angry and frustrated with the Chiari – not with you.
12) DO let me know when you are available to help me when I ask. I will be grateful.
13) DO offer me lots of hugs and encouragement.
14) DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. Chiari is like that.
15) DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I cannot join you at the end of the trail. Please let me decide.
1) DON’T assumeu because I look well that I feel well. Looks can be very deceiving. Many days I look great but I feel terrible.
2) DON’T tell me you know how I feel. No one knows how anyone else feels. Two people with the same condition may feel totally different.
3) DON’T forget that we all have varying thresholds of pain and pain cannot be measured.
4) DON’T tell me about your Aunt Gertrude and her Chiari and how she has managed well in spite of it. I am not Aunt Gertrude and I am doing my best.
5) DON’T tell me “it could be worse.” Yes, it could be. But, I don’t need to be reminded.
6) DON’T decide what I am capable of. Allow me to decide what activities I can participate in. There may be times that I make the wrong decision. If I do, I’ll know soon enough.
7) DON’T be upset that you cannot ease my problems. It won’t do any good for both of us to be miserable.
8) DON’T ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to hear.
9) DON’T assume that because I did an activity yesterday that I can do it today. Chiari is every-changing.
10) DO learn everything you can about the condition. The more you know, the better equipped you will be to know what to expect.
11) DO realize that I am angry and frustrated with the Chiari – not with you.
12) DO let me know when you are available to help me when I ask. I will be grateful.
13) DO offer me lots of hugs and encouragement.
14) DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. Chiari is like that.
15) DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I cannot join you at the end of the trail. Please let me decide.
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