Afraid of not being believed?
OliveOilMom
Veteran

Joined: 11 Nov 2011
Age: 61
Gender: Female
Posts: 11,447
Location: About 50 miles past the middle of nowhere
If you have been dx'd by a professional, then you have it no matter what the other person thinks. If you have not been dx'd by a professional and you are pretty sure you have it, and you are doing ok otherwise and the dx helps you deal with your own things better, it still doesn't matter what the other person thinks. If you need others to know of your dx because you need help or understanding in a certain area, and they don't believe you, then there may be nothing that you can do except go and get a dx, to get them to believe you.
I honestly don't see the need to tell anyone about the dx unless it will effect them directly in a way that can't be explained by something else. An example would be you not wanting to hang out with friends as often as you are invited. An explination of "I just have a lot to do?on my mind" is sufficient. If something at work is bothering you such as someone spraying air freshener or playing the radio, telling them that you have allergies (spray) or trouble concentrating (radio) is sufficient. Most things can be explained by something common, and unless it's something unusual you probably don't need to tell them about your AS.
I tell on a need to know basis, and I've also told a friend or two while we are sitting around talking about private matters in our lives. If a dr needs to know that you are more sensitive to pain or dislike touch, simply say matter of factly at the beginning of the visit "I'm very sensitive to pain/dislike touch, I have AS" and leave it at that. For a dr visit, I would put it on my medical history form. Unless something is likely to happen where their actions/treatment would change drastically, there is no reason to even tell them. If I go to the ER with a migraine, I don't mention my AS. It has nothing to do with getting a pain shot. It has nothing to do with why I have the migraine. If I'm at someone's house and there is too much going on and I have to leave early because I am overwhelmed, I just tell them I'm not feeling well. Knowing I have AS will not change anything. Not feeling well is true, and it's much easier for them to comprehend that then it is to comprehend overload.
Always choose the simplest option.
_________________
I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com
I honestly don't see the need to tell anyone about the dx unless it will effect them directly in a way that can't be explained by something else. An example would be you not wanting to hang out with friends as often as you are invited. An explination of "I just have a lot to do?on my mind" is sufficient. If something at work is bothering you such as someone spraying air freshener or playing the radio, telling them that you have allergies (spray) or trouble concentrating (radio) is sufficient. Most things can be explained by something common, and unless it's something unusual you probably don't need to tell them about your AS.
I tell on a need to know basis, and I've also told a friend or two while we are sitting around talking about private matters in our lives. If a dr needs to know that you are more sensitive to pain or dislike touch, simply say matter of factly at the beginning of the visit "I'm very sensitive to pain/dislike touch, I have AS" and leave it at that. For a dr visit, I would put it on my medical history form. Unless something is likely to happen where their actions/treatment would change drastically, there is no reason to even tell them. If I go to the ER with a migraine, I don't mention my AS. It has nothing to do with getting a pain shot. It has nothing to do with why I have the migraine. If I'm at someone's house and there is too much going on and I have to leave early because I am overwhelmed, I just tell them I'm not feeling well. Knowing I have AS will not change anything. Not feeling well is true, and it's much easier for them to comprehend that then it is to comprehend overload.
Always choose the simplest option.
I have been diagnosed by a professional. Logically, I know it doesn't matter if they believe me or not, but I still hate to basically be called a liar or a hypochondriach.
I think your idea of simple explainations is good. I also like the previous poster's comment about telling people if he/she (sorry, I didn't look at the poster's info) gets feedback that he/she is acting cold. I don't think I would do that very often, but once and awhile, with people I know better, I would like to be able to tell them. I think I should just tell people I trust, though. I don't want everyone to know.
I agree it's better to just give a common explanation. The only thing is, that's not enough for most people. They might stop doing those things for awhile, but they eventually start doing it again. One day they wait until you leave the room then they spray the air freshener and when you come back in the room, they deny that they did it. My own family will spray air freshener right in front of me, and they know very well that such things make me cough and wheeze like I'm having an asthma attack. People don't care! In my experience very, very few people care enough to be considerate of these things. It usually takes more than a simple explanation and polite request. I wish it didn't.
OliveOilMom
Veteran

Joined: 11 Nov 2011
Age: 61
Gender: Female
Posts: 11,447
Location: About 50 miles past the middle of nowhere
I agree it's better to just give a common explanation. The only thing is, that's not enough for most people. They might stop doing those things for awhile, but they eventually start doing it again. One day they wait until you leave the room then they spray the air freshener and when you come back in the room, they deny that they did it. My own family will spray air freshener right in front of me, and they know very well that such things make me cough and wheeze like I'm having an asthma attack. People don't care! In my experience very, very few people care enough to be considerate of these things. It usually takes more than a simple explanation and polite request. I wish it didn't.
AS does not cause you to wheeze, although it can cause you to be overly sensitive to smells in the way of being bothered by them. If you are wheezing and they keep doing it, they are disregarding your health rather than your comfort.
_________________
I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com
OliveOilMom
Veteran

Joined: 11 Nov 2011
Age: 61
Gender: Female
Posts: 11,447
Location: About 50 miles past the middle of nowhere
I know that, and I did not say that it did. I actually do have allergies. I was also told by a nurse practitioner that I probably have asthma, but it would be best kept out of my medical records unless/until I get insurance.
I know you didn't say it did and I didn't say you said it did. I was pointing out that a situation like the one you described with the air freshener wouldn't call for telling someone you have AS, it's a health concern. I also know you didn't say that it did call for it, I was just pointing it out, because of the subject of the thread.
_________________
I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com
Outside of my really really close family the only other people that know are two of my bosses at work. Both who have made it any unwritiern rule that if I'm doing something work on something they won't bub me at all about anything.
Also from time to time they will check up on me and see how I'm doing. Outside of those two only three other people know. One of them is a person I work with so I wanted to let her know and she is fine with it. Though it's not easy to talk with her about it if I need to because there are other people around. Same with another guy who I work with that I think of as a friend. The last person to now is the HR person. She is very nice and out of ever one there is the only one I can really go to if I'm having a really bad day like last friday. None of them look at me different and my bosses always tell me that I do a good job and if I am having a bad day or things don't work out the way I want them to.
Thankful after tomorrow I have a whole week off so I can work on putting the whole month of January behind me.
As for do they believe me well yes they they know I'm not making it up so.