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Telling People about your AI


Forum: Autoimmune Diseases and Disorders

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  #1  
July 5th, 2007, 08:52 AM
the_elmel's Avatar Platinum Supermommy
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Do you find it easier to NOT tell people about your AI?

Most of the time people think I have a contagious disease when I explain to them I have Celiac. They always look at me like I have 6 heads, too! Sometimes I just find it easier to keep it to myself rather than having to explain it.
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  #2  
July 5th, 2007, 03:27 PM
Colee's Avatar Platinum Supermommy
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I feel diseased The people that have known me BEFORE getting my AI disorders know I have them. The people I have met SINCE being dx...thats a whole other thing. I feel diseased when I tell someone about UC,so then I wont say anything about my MS...or visa versa. I have several friends(that I have met in the past year) and I havent told them. I just cant bring myself to,because I want people to know ME.not be friends with me because they feel bad for me or something.

So,Yes...I find it easier to NOT tell people.
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  #3  
July 5th, 2007, 11:55 PM
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Quote:
I feel diseased The people that have known me BEFORE getting my AI disorders know I have them. The people I have met SINCE being dx...thats a whole other thing. I feel diseased when I tell someone about UC,so then I wont say anything about my MS...or visa versa. I have several friends(that I have met in the past year) and I havent told them. I just cant bring myself to,because I want people to know ME.not be friends with me because they feel bad for me or something.

So,Yes...I find it easier to NOT tell people. [/b]
It's so sad we have to feel like this.
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  #4  
July 6th, 2007, 10:02 AM
Colee's Avatar Platinum Supermommy
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Quote:
Quote:
I feel diseased The people that have known me BEFORE getting my AI disorders know I have them. The people I have met SINCE being dx...thats a whole other thing. I feel diseased when I tell someone about UC,so then I wont say anything about my MS...or visa versa. I have several friends(that I have met in the past year) and I havent told them. I just cant bring myself to,because I want people to know ME.not be friends with me because they feel bad for me or something.

So,Yes...I find it easier to NOT tell people. [/b]
It's so sad we have to feel like this.
[/b]
It really is a shame
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  #5  
July 8th, 2007, 08:16 AM
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I discuss it with people. So far I haven't encountered any really ignorant people. I just get a few, "Oh really? You have MS? Wow, I'd never know." They just leave it at that. At least the crowd in North Carolina. In NY I'd get a few unwanted faces if it was discussed, but for the most part, I didn't really talk to many people then.

My friends all accepted it very easily. One of which had cancer in her life so she was feeling more like she had someone to relate to as far as living with a scary disease. Another friend did try to give me advice on diets and exercise and other things I really didn't want to hear, but she was trying to be helpful and I never took that for granted. I thought it was great she was trying to get involved in making me feel better. She felt pretty helpless at the time of my attacks so that was her way of being supportive. I accepted that. Though I'd just prefer her company most of the time.

Here in NC, I've discussed it with my classmates at school and they don't seem to mind it at all. Some fascination, but it's surprising how many students there have a family member or friend with MS and have an understanding about what I have.
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  #6  
July 8th, 2007, 04:17 PM
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Quote:
Do you find it easier to NOT tell people about your AI?

Most of the time people think I have a contagious disease when I explain to them I have Celiac. They always look at me like I have 6 heads, too! Sometimes I just find it easier to keep it to myself rather than having to explain it.[/b]

I dont really tell people unless they are close friends or someone that has to know !!
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  #7  
July 8th, 2007, 05:21 PM
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Quote:
I discuss it with people. So far I haven't encountered any really ignorant people. I just get a few, "Oh really? You have MS? Wow, I'd never know." They just leave it at that. At least the crowd in North Carolina. In NY I'd get a few unwanted faces if it was discussed, but for the most part, I didn't really talk to many people then.

My friends all accepted it very easily. One of which had cancer in her life so she was feeling more like she had someone to relate to as far as living with a scary disease. Another friend did try to give me advice on diets and exercise and other things I really didn't want to hear, but she was trying to be helpful and I never took that for granted. I thought it was great she was trying to get involved in making me feel better. She felt pretty helpless at the time of my attacks so that was her way of being supportive. I accepted that. Though I'd just prefer her company most of the time.

Here in NC, I've discussed it with my classmates at school and they don't seem to mind it at all. Some fascination, but it's surprising how many students there have a family member or friend with MS and have an understanding about what I have.[/b]
My house is always cold. In the winter I leave it on the cooler side and in the summer I have on the AC. I always figure if you are cold,grab a sweater or a jacket. But if you are hot,you can only take off sooo much...kwim? Well,My SIL is a freeze baby and she always complains about how cold my house is. Finally yesterday I explained to her that I have *some problem* with my thyroid,not really known exactly what yet...it causes me to get over heated,sweat alot. When I get like that,my MS acts up and makes things bad for me. FINALLY she has stopped complaining...because finally she understands. Maybe I should try harder to explain to people,rather then assume they know
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  #8  
July 8th, 2007, 06:30 PM
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I've always felt the more people understand or at least hear, the more they'll put aside some of their assumptions and prejudices about diseases.

I knew someone with epilepsy. Her mother told her never to tell others because they would assume she was possessed. That was old school thinking, but her mother was afraid of how people would take it. But my friend would tell a couple of close friends including myself. She was right. the more people understand a condition, the more they can help you during your time of need. Had she had an attack in front of me, I'd have known what to expect and what to do only because she explained to me what she had, what it means, and what to do in case something happens. Had I not known, I may have tried to do something that would have gotten me hurt or her hurt. You shouldn't touch a person going through an epileptic seizure but only try to keep sharp things and heavy things away from her. Never stick your fingers or a pencil or anything in a person's mouth when seizing to keep her from biting her tongue. The person may bite her tongue but she will definitely choke or bite down on your finger if anything is put in there. If possible, put pillows around the person but just don't get too close, she can punch and bite while an attack occurs (for those that have violent seizures like hers). Also I learned to call 911. When she's calm, to repeat to her your name, her name, and ask is she alright. That way she can focus and remember where and who she is as she's coming to.

I figure if people are aware of what I have and I show up one day at school or at a friend's house limping, or on a cane or some other oddity, they will have had warning and won't be in total shock.

I don't know if I'd tell people at work. I'd be working closely with more people in close quarters and I wouldn't want to deal with the rumors, biased opinions, and possible grief from a boss. Unless it becomes a problem at work and it interferes with my ability to do my job efficiently, I'd say leave the personal stuff in my personal life and only tell friends and family about this sort of stuff.
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