PA adults--How do you handle people who don\'t \"get it?\" What about guilt trips?

As a PA adult, I don't know that I've ever dealt with anyone who DOES get it. I think people are just now getting the education and knowledge about PA and the possibility to "get it" is relatively a new concept.

My family has never been a big nut/peanut eating bunch - even the extended family so that hasn't been much of a problem. With others (friends and relatives) who are aware of my allergy I make a point to leave the room if any peanut product is present. If someone doesn't know about my allergy, I will leave the room after explaining why I'm leaving.

Rebekah

Jennifer,

I am lucky that I have educated my entire family, all my friends, and co-workers. I know sometimes they think I am preaching, but you know I really don't care, this is very serious to me. Whenever I learn something knew (especially on this board) I share it with everyone. I try and educated as much as possible.

One of my good friends, just had a baby and she ate peanuts throughout her pregnancy and I warned her, but she didn't listen. I now have warned her about eating them during breast feeding and I know that child will be PA, but all I can do is share information and hope that they listen, however, some refuse.

Keep spreading the word!!

Melanie

OOPS!! I accidently posted twice!!

[This message has been edited by JenniferMN (edited April 10, 2001).]

Melanie,

I'm glad that you're able to get some valuable information to your friends/family. I would love to know any tricks you have to get people to listen.

My original post here was about my in-laws, but I chose not to pick them apart. However, my in-laws do drive me crazy. They set out a dish of peanuts for us to munch on while I showed them my Epi-pen and explained why I would need it!

They have also seen me during a reaction. It was rather mild, but I was reacting just the same. Even that didn't do much for them as far as realizing how fast I things can happen. They were quite indifferent.

I would like to skip some of the gatherings involving my husband's family (the dinners), but every time I say I am not going, I let a big guilt trip set in. Like we will never hear the end of it if we "rock the boat".

We have already shared a lot of info. about what I can and cannot eat, what a reaction will do to me, why I need the Epi-pen and even how to use it. But, I don't know how to get them to take this more seriously. They see it as just my problem and something they don't have concern themselves with.

I think only God could make them change their nut-eating habits. (I hate to think of what would happen if we ever had PA kids)

Hi,

I can totally relate to this. I don't really consider myself an adult at 16, but as far as my nut allergy I do because I am the one that has the ultimate responsibility for it. But it is amazing how few people get it.

I just try to give them as much information as possible and if they are clearly being evasive or simply not getting it, then I simply try to "scare" them into getting it.

Obviously not physically, but I whip out the EpiPen, show them how to use it and do so with a very brisk tone of voice.

Maybe it isn't exactly ethical but the results are not worth compromising!

Rachel

Jennifer,

You had asked about my "tricks" to tell you the truth, I just share all my knowledge about this allergy with anyone who will listen. My parents, especially my mom "got it" quickly. My In-laws are wonderful, they are very quick to response and have never given me that look like "yeah, so what would happen to you if you did eat one?" They are very supportive!

My husband is now, however, it was only three years ago that I had my worst reaction to date, where I ended up being taken to the ER by a co-worker and she had to call him with the news. We were about to be married at this time and it really hit home for him that this isn't something in my head that I made up because I want or need attention. I can die. Since then he has been very supportive and understanding.

So my key is talking. I know that I sometimes talk to much about it, but it feels so good to have those around me understand and respect my situation.

Melanie

I have not experienced any guilt over this allergy-everyone that I have to tell is very understanding. When I am going to a party- I ususally eat before I go and I also will take an over the counter Benedryl type medicine (long acting pill) my allergist suggested this as a way to already have some type of medicine in my system incase a reaction starts and to always carry liquid Benedryl with me wherever I go. He suggested using the benedryl first and the epipen as a last minute thing. I live 30 - 45 minutes away from an ER and with quick benedryl action was able to forego the epipen and the ER. best of luck to all of us who must be careful of thsi type allegy.
Susan

I AM 36 AND I AM AMAZED AT ALL THE HYPE LATELY WITH PA. I BELIEVE IT IS A PASSING TREND. I CONSTANTLY STRUGGLE TRYING TO EXPLAIN TO PEOPLE PA IS A SERIOUS ISSUE.
MAYBE I'LL BREAKOUT OF SOMETHING IS THE ATTITUDE I MOST OFTEN ENCOUNTER. SOME PEOPLE THINK ITS LIKE A COLD AND IT WILL GO AWAY.
IF I DON'T STAY VIGILANT READING FOOD LABELS AND NOT BEING TO DARING AT RESTAURANTS I DON'T GET SICK TO OFTEN. STAY AWAY FROM EGGROLLS.

Hi I'm 33 and have PA all my life. My first experience with PA was at about a year old. My grandmother who lived upstairs used peanut butter cups to lure me up the stairs when I was learning to crawl. I would get to the top eat my treat and by the time I made it back downstairs was already full blown anaphalaxic shock. 3 minutes to the closest ER. Thank God I live in the city. My parents took PA very seriosly from the beginning. 5-6 trips to the emergency room in 2 weeks will do that to you.
Anyway I don't try to explain it to people who don't "Get it". I just don't eat what they offer and if this doesn't work after a couple of times then I invite them to my house so I can control the ingredients. If that doesn't work then they don't see me for those dinner parties.
I don't understand what you mean by "guilt trip". Are you saying someone is trying to get you to eat something you shouldn't? If so thats not a guilt trip thats a request to commit suicide. In which case avoid that person!!! They are unsafe.
I hope I havn't ranted to much. I am just so glad to finally find other people with similar allergies.

I am a 62 year old woman who has been TA/PA all my life.

I don't have problems with my friends or family 99% of the time. Too many have seen me ill or known that I have almost died from my allergies to take them lightly. Actually, they act like watchdogs when we eat out. They have banquet people bring me special food. None of them serve nut items in their homes.

When we go to a potluck, I always take a hearty salad or main dish which I can eat. I have gotten pretty good at figuring out which salads are "ready made" and safer than home made. I will eat a green salad if I see the utensils beforehand and know the ingredients of the dressing. I munch on rolls and butter.

I remove, or ask to be removed, dishes of nuts from tables near me, and explain why. If people won't do it, I make a big point of leaving.

I have been called by my family a really strong type A personality, so I don't take much guff from fools who want me to eat food which will kill me or to smell odors which can kill me. I use every opportunity to EDUCATE people with whom I come into contact.

My last anaphylactic episode was in Japan in 1990 while at an international conference. My colleagues still check my purse to see if I have my epipen.

I never eat any type of Asian food unless I see it made in front of me and know that the utensils and pots are spotlessly clean when they cook the items. My manicurist (Vietnamese Chinese) says I should never go to a Vietnamese, Chinese, or Thai restaurant. I have been to Hong Kong, Thailand, and Japan and have been extremely careful and been fine by just being careful. The reaction I had in Japan was my own fault as I let down my guard.

One thing that I do with restaurants and hotels, especially when I am at conferences, is to notify them of my problem in a firm voice, and then praise them when they help me. I send letters of appreciation about staff members, and I also tip. Why not. We routinely give tips for bad service, and I give them tips for good supportive service.

Four years ago, we moved to this city after having lived in another one for 30 years. Two interesting things have happened. I have educated hundreds of people here. The other is that I went to a restaurant for a banquet in my former town and the waitress came over and told me she would see that my meal was safe. She remembered!

I think the key is being firm and not acting like this thing is a disability. To me, a disability would be not walking or being totally deaf. I can eat carefully and do just about anything I wish.

I have had really good luck with my family & others. What I find works the best is to tell them about fatal reactions I have read about. I don't mess around with explaining the importance in any detail. I just tell these stories & every time people perk up & pay attention.

On New Year's I called the restaraunt we were going to & they checked for me. No peanuts. When we got there I asked the waitress again, just to double check. She rolled her eyes & said that she was the one on the phone & NO they had no peanuts/peanut oil in their meals. She was visibly irritated that I had asked again. I smiled & told her that I was overly cautious. I said, I guess since that little boy died in Washington because he ate a peanut cookie, I am just so nervous I may lose my little boy. Her attitude changed FAST. Her eyes kind of popped open. It can be so hard to make people understand how serious this is!

I think I've been pretty lucky with getting people to "get it", but there are just some people who think you're over-reacting. Oh how these people annoy me! When I'm out with someone who I know doesn't appreciate the seriousness of the allergy, I make it more obvious. I'll complain about always having to read all the preservatives in food looking for nuts. When looking for something in my bag I'll take out my epipen. That kind of thing. Eventually I think people understand, or at least pretend to so I'll stop talking about myself!
To give you a ray of hope, just a few days ago a good friend of mine admitted that she didn't get how bad the allergy was until the week before. We had planned to go out to dessert (torture, I know) at a place that I know is safe. Our plans changed last minute, and we ended up going to a place laden with nutty cake. I explained all the reasons the dessert cart was a nut mine field and so I was going to have to stick to coffee. She said the lightbulb went on, and she felt so bad for years of rolling her eyes when I turned down chinese food.

Actually most of my friends and family don't "do" peanuts so I don't have to worry too much. My coworkers were AWESOME when I worked at this one school. My friend of 17 years has told me to remind her that I am allergic (she knows, but sometimes will forget) and she will refuse to eat peanuts in front of me.

I have another friend I've known for the same amount of time and she is a complete idiot when it comes to the allergy. I told her I wanted to educate her on the Epi Pen and to realize that people could potentially die from a reaction. She looked at me strangely, but I told her I was serious. I don't think she will ever get it, but then I don't think she really cares about anyone but herself anyway!

I work at an elementary school, and while I don't have a severe peanut allergy, I am very allergic to tree nuts. (I'm told I'm intolerant to peanuts, they just make me ill) I carry an Epi-Pen that I keep in my staff mailbox. The old school that I was at was great, the minute that they found out I was allergic they announced it at a meeting, made sure everyone knew where my Epi-Pen was, and even posted my info on the medical alert board that usually is reserved for students (the same day, even!). They tried to bring in nut free treats, or at least have an alternative for me, and some would remind me if I was lax. My new school that I started at this week doesn't seem to think it's a big deal. Already it's been a week and they haven't posted my info or told the staff, I've had to inform people (who likely have forgotten or acted like they couldn't understand why I was telling them anyhow). The teacher I work with even keeps a large bin of almonds, hazelnuts, and walnuts (in the shell) in her room for the children to play with. I am VERY allergic to hazelnuts and almonds. I told her that she had to remove them and she couldn't understand what the big deal was. I have never had a severe reaction yet, but it makes me nervous that these people might not know what to do if I DID have one. Should I just be more vocal?

Also...one thing that really ticked me off...I went on this dinner cruise with my family. We phoned ahead and told them about my allergy. They assured us that NO, there were no nuts in any of the food on the boat. I asked again when we arrived, and the same answer was no. We LEFT the harbour and the chef comes to me and asks if I'm allergic to peanut oil, and if I am, I can't eat a thing because they can't guarentee that it's not contaminated. My GOD. If I was peanut allergic I would have been livid!

Wow! How blessed so many of you are to have people in your lives that understand. No one in my life seems to really get it. My fiance does, although he still will bring his peanut butter cookies into the apartment from time to time. My Dad has been in denial my whole life, telling me that I must be joking because no one has an "itchy tongue" Whenever I am at work or some place, and someone gives me a peanut candy or cookie, I accept it and throw it away later. I am very shy, and I hate drawing attention to myself over it. I am very careful. But I don't want my allergy to take over my life, it is only one part of the important person I am. Maybe if I was more vocal about it, more people would get it. I don't know.

Star

Hi I am allergic for almost 3 years now. I have a mother in law who dosn't get it and it is very frustrating. But I am very vocal because I love my family and tell people if they can't be careful I will have to leave because I do not want my children to grow up without a mommy! I know that this soundlike a bit much but I feel if they don't get my allergy then mabye they will at least feel for my children. This I do not feel is guilt on my *MIL* I feel that it is the truth. I get very angry when people dont get it. I have a nephew who is touch allergic and has had many close calls and it is to scary to stay quiet. Sorry for rambling or ranting I hope that you get some to understand.
Patti

My 18 year old son is PA. Everyone who knows us knows *** is PA. If anyone we know deliberately serves peanuts when *** is attending, that is the last time we are with that person. It's that easy. Life is too short.

[This message has been edited by Peg541 (edited April 19, 2003).]

The staff at my school is great. They have learned my signal (I raise both hands in stop position my Mom taught me to do this she could tell there was a problem across a room). I keep my epi in my camera bag (Digital that I bring to school each day) I'm outside the building and my principal wants me to have on me at all times. She had me speak to the staff. My students are trained to call the office, get the other portable teacher or the librarian if I have a reaction in the classroom. I teach G&T and the 4th grade G&T teacher is Hypoglycemic, so they had an emergency plan last year also.

re-raising for Shelleo

I hope someday to be around people who do 'get' dd allergy! My inlaws are a joke, they talk about getting it and all they do to help us, while downtown having coffee. Small town and this makes them look good. I went to a friend and told her, if anyone ask anymore about inlaws and dd, tell the truth! I am to the point of not caring if I piss anyone off. My inlaws are always mad about something I did or didn't do or say so, I give up and don't plan on having much to do with them anymore.

i hear you all on people not getting the whole pa allergy, my family and in laws have been so wonderful about my dtr being pa. however trying to explain to co workers that peanuts can kill my child~~was well lets just say a very trying matter..one of my co workers said that her dtr would only eat peanut butter sandwhichs for lunch at school and i said that could harm my child.. but she kept insisting that it was all her child would eat but i kept insisting that it could kill her(my dtr) and she didnt get it until i said it could kill, dead, deceased ,and i would lose my dtr and yours would still be
alive.. then right at that moment a child came to our office (i work in pediatrics) with a full blown reaction..it was then that she got the picture...god couldnt have even timed that better to show proof i was serious
she apoligised afterward. and the child was fine. thanks for letting me blow off steam~~~~loving mom to jordan-marie

I think that this is definitely a topic worth re-raising, as it's something we deal with all of the time.

Without getting into specific (ranting) stories, I'm sure you'll all relate when I say that my husband, who has been PA/TNA all his life, never stops encountering people who "forget" or just don't get it.

But it's not always possible to cut these people out of our lives... boy would we get lonely fast! So our strategies have come to include:

- Grabbing a sfe bite to eat before we get to the party
- Bringing our own dish (usually a safe dessert!) to share
- Calling ahead to drop a quick reminder
- NEVER going near something we don't know is nut free FOR SURE
- helping out the host/hostess in the kittchen-- so we can see what ingredients are in each dish and make sure nothing gets cross-contaminated (plus they think you're so sweet for it!)
- Always mentioning out cute little dog, Peanut.... this usually jogs the memory of any "forgetful" relatives!

Emily

[This message has been edited by Nutty Wife (edited September 17, 2004).]