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 Post subject: Farewell Mat!
PostPosted: Fri Jun 02, 2006 2:45 am 

Joined: Mon Mar 20, 2006 3:03 pm
Posts: 105
Location: Coquitlam
Karen perhaps you should make a farewell mat for all the unwelcome participants or the ones who choose to leave.

When I joined this forum I thought it would be a positive experience. With people helping one another find solutions on how to help and keep the individuals with allergies safe and how to better educate the general public who are unaware of life threatening allergies.

In fact what I did discover were individuals who felt sorry for one another and prefer to be angry at the world for having to deal with allergies. Yes, living with life threatening allergies on a daily basis is not easy but it is also harder when all that is done is dwelling on the negative.

I have tried to post positive aspects of allergies and different ways to help educate but its funny how very few individuals participated. However when it is a thread to slander schools, libraries and corporations many prefer to participate. Not in a way to solve the problem but a way to draw out more of the negative. I have found that things are somewhat clearer when it is seen from the outside looking in and as soon as someone questions the ideas or comments posted on this forum from an outside perspective this forum jumps on the defensive rather than try to see things from a different angle. God forbid if they actually had to step out of their little misery bubbles.

I have found living with life threatening allergies has drawn our family closer. We work as a team to keep each other safe and are not afraid to tell one another how much we care. It has helped us to be stronger individuals and not afraid to speak up when we feel it is needed. It has shown us that most people really do care when it comes to the safety of others. It has helped us understand how smart and understanding children are and how they are so much more than just their allergies. Allergies have taught our family just how much one person can accomplish when they put their minds to it. We also live on a much healthier diet. ............I found all of the above positive experiences as blessings in disguise because of my sons’ allergies.

I really do wish you all the very best and hope that one day you all will be able to see what life really does have to offer.


 Post subject:
PostPosted: Fri Jun 02, 2006 8:35 am 

Joined: Thu Aug 11, 2005 6:48 pm
Posts: 614
Location: Ontario, Canada / Cambridge, UK
This forum can still be a positive experience, even when people express their concerns and frustrations. I think therein lies your problem. You consider criticisms and opinions different than your own to be merely unconstructive complaints based on anger and self-pity. Sure there are threads where people express their frustrations but I wouldn't say that this attitude permeates the forum. Besides, it's healthy to let it out sometimes, especially with people who are in the same boat as ourselves. What I find concerning is that you believe that the posts that relate activism, advocacy and awareness-raising are merely useless rants from people who live in "misery bubbles". I have not seen any "slanderous" posts on schools, libraries or corporations... merely ones that express very concrete criticisms and opinions based on personal experience. Because you so strongly believe that some people in this forum are full of anger and self-pity, your reply posts are critical and belittling, sometimes on a personal level. You then resort to sarcasm as a way to further belittle the poster. This is what is unacceptable and this is what puts people on the defensive. There have been many debates in this forum and I can say that they have all been healthy. We show mutual respect, express our opinions and back them up with fact or personal reasons. We agree to disagree and then move on.

Perhaps you are disappointed that not everyone has participated in your "positive" posts. I'm really not sure what your expectations are but if you are expecting everyone to agree with you all the time and take your advice, then it is inevitable that you would feel disappointed. I think what you fail to see is that, even though we are in the same boat, everyone's experiences, realities and challenges can differ greatly from your own. This is what you seem unable to accept. Some people deal with multiple allergies or live in communities that offer very little support or where there is greater ignorance on the subject... others must deal with the challenges of those around them who don't understand the severity of allergies... and some have experienced or witnessed terrifying reactions and gone into anaphylactic shock. It is inevitable that their perception will be different than yours. Based on these factors, they will make decisions that you would not necessarily understand. This requires open-mindedness and tolerance.

You keep saying how people here fail to step back and look at things from a different perspective, but you are not doing that yourself... you seem unable to look at things from another perspective other than your own. It seems you want people to step back and look at things solely from YOUR perspective. You compare everything to your own situation and therefore can't understand the choices other people make.

The biggest challenge and source of stress for those living with allergies is dealing with people who don't understand their concerns and make them feel like they are over-reacting. When you state that there are individuals in this forum who are angry and full of self-pity for having to deal with allergies, you become yet another one of those people who don't understand. Your responses alienate people from posting and sharing their experiences in this forum. This is not to say that you can't express an opinion, but there are ways to do it that don't make people feel criticized or belittled.

It's great that you have positive experiences in your family and I can understand how you want to help everyone achieve what you have achieved. But you must realize that just because people express concerns, criticisms or frustrations, it does not mean that they live or deal with allergies in a negative way or have an unfulfilled life. It's just that their lives and ways of dealing with things are different than yours.

In spite of these differences, I feel as though there is very much a team spirit in this forum.

All the best in your future endeavours.

16-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

Last edited by Storm on Fri Jun 02, 2006 10:31 am, edited 2 times in total.

 Post subject:
PostPosted: Fri Jun 02, 2006 9:19 am 

Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada

I just wanted to say that I think there is room for dissenting opinions or different perspectives. And it is good to have a variety of perspectives. Everyone is at a different place....I find that my own view of allergies and feelings about how I'm handling them changes over time. If you disagree with peoples' criticisms about libraries, corporations, whatever, that's fine--it initiates the kind of discussion that we all can learn from. It's just that I think it is key to focus on the issues at hand and not on the person or on what you think might be motivating them.

 Post subject:
PostPosted: Fri Jun 02, 2006 12:06 pm 

Joined: Wed Mar 23, 2005 1:17 pm
Posts: 50
Location: Hamilton, Ontario
Sil, I hope you will come back to scan the posts from time to time. I stopped posting awhile back because I felt I had been criticized unfairly but I went back to re-read the discussion and I decided that since I could not determine the "tone" of a writer's voice and they couldn't hear mine that my hurt feelings were minor compared to the knowledge I have gained from this forum. I am more careful in what I post now and I recognize that everyone has a different comfort zone when it comes to handling allergies. Everyone's life experiences are different too and can affect how writing is interpreted. Perhaps we'll hear from you again down the road.

Mom of 21 yr old son with peanut/nut allergy & environmental allergies

 Post subject:
PostPosted: Fri Jun 02, 2006 12:45 pm 

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Sil - I'm sorry that you're choosing to leave. I'll miss your good ideas and suggestions.

While I agree with you that having allergies can ultimately end up being a positive experience in some ways, living with allergies is an ongoing journey, and everyone is at a different place in that journey.

The only thing we all have in common here is allergies. Some of us have kids or grandkids with allergies, while others have allergies themselves. Some of us are dealing with peanut and nut "only", while others have a whole list of life-threatening allergies and all that that encompasses. Then there's differences in age, culture, gender, education, language, length of time on the allergy journey, etc. That's a lot of differences! No way are we all going to agree on things all the time or approach things in the same way.

I remember when I felt isolated, alone, exhausted, misunderstood, angry, etc. I probably wasn't that much fun to be with, and I'm glad I'm not at that place any more, but I feel it's because I've had a chance to work through all that that I'm where I am now -- in a fairly good state of mind. I got a lot of support at Parents of Food Allergic Kids (POFAK), another online forum -- and people were actually encouraged to vent there. "Hey, if you can't vent here, where can you vent?" was a common refrain. That's one of the major pluses of support groups/forums, in my opinion -- to make people feel like they're not alone and have someplace to turn when the going gets bad.

Like you, I personally prefer to focus on the positive, but I can understand how some people aren't at that place at the moment. It's natural to feel angry or frustated sometimes, especially if you've been treated like crap by professionals, friends, relatives, school officials, or others! Sometimes the negative treatment has been to the detriment of the health or safety of the allergic person, and that's really not good. I don't want this forum to turn into a vent-o-rama, but I don't think it's fair to ask people to be happy and positive all the time.

At POFAK, people certainly had different points of view -- there are hundreds if not thousands of members -- but the moderators made sure we realized that we were in the same "allergy boat" and needed to help each other out rather than criticize each other. And that's what I hope to accomplish here.

Anyway, I have learned over time that I usually don't know the whole story of what is going on with someone, and that it's best for me to let them express themselves, even if I totally disagree with what they are saying. It doesn't do me any harm for someone else to have a different point of view. But as had already been said, we need to make sure we focus on the topic and not on the person doing the posting.

Take care,


[Edited slightly for clarity.]

Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Last edited by KarenOASG on Fri Jun 02, 2006 12:56 pm, edited 1 time in total.

 Post subject:
PostPosted: Fri Jun 02, 2006 12:48 pm 

Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada

Sometimes it may seem like all we do is complain...but all we do here is talk about allergies...something we would all enjoy living without...but it is just a small part of who we really are.

I am thinking here that when you refer to people (probably me) who do not continue with school or activities you are assuming that I am "going away angry". I am not. I live in reality where not everyone is willing to conduct themselves in a manner that is safe for my kids. Yes, some people suck...that is reality. Since, I do live in a frame of mind with a positive attitide...I choose not to fight, fight, fight, and make myself and my kids miserable. If the library (for example) is not safe or fun...then have some friends over instead, go to the zoo, gymnastics etc. Fill your life with enjoyment rather than misery. There is no misery bubble here.

See, part of living with a positive attitude is accepting and enjoying the things we are able to do safely, and not dwelling on what it is we choose to avoid.

DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

 Post subject:
PostPosted: Fri Jun 02, 2006 11:06 pm 
Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6616
Location: Ottawa
I am sorry to see anyone leave this forum as I feel we all have something valuable to contribute. Our experiences, our ideas and our convictions.
I find that by coming here and posting a problem or concern, I can take a free floating idea or feeling and turn it into a concrete thought. This alone is a huge relief. Once I see my "problem" I can focus on how to solve it. It might be a physical action such as removing an item from my house, writing a letter etc. It might be an attitude adjustment on my part.
Each and every post has helped my to see others perspectives or has offered solutions to my concern. I might not act immediately on any suggestion, I might never act on it. Sometimes ideas springboard into other ideas. I don't expect everyone to follow my suggestions.
I hope that we can all feel that this forum is a safe place to come to where others support us while we work towards leading healthy active lives in the best way that we are able. I hope that we can offer points of view with the intent to add elements to the discussions. I don't expect others to always agree with me or follow my advice. I do expect them to respect my choices as being mine.
I find that most people are doing just that. I am very happy with this forum. I find the moderators and administrators act quickly to solve problems and are open to suggestions on how to improve.
I am glad that Sil felt comfortable in posting her distress and I hope that we can all grow from this experience.
I wish her and her family health and happiness.
Perhaps she is at a place where this forum is not needed as much as some of us might need it.
I hope she will feel that she is welcome here anytime she might need to return.

Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

 Post subject:
PostPosted: Sat Jun 03, 2006 7:09 pm 

Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
I think it is good for people to come here and talk about their frustration, and "get it off their chests." It's nice to vent with others who feel the same way and have to deal with the same things. Not everyone is dancing and singing "yippy! I almost died last week from eating something that touched milk. Let's learn from this experience." We are scared, and frustrated, and angry at people for not taking us seriosuly.
I hope you find a community that you're more comfortable with. Good luck.

2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish

 Post subject:
PostPosted: Sun Jun 04, 2006 11:31 am 

Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Sil, I do hope you will come back and "visit". You sent me some very supportive messages at a time when I needed it. Our family being kind of new to this, we have been going through a few ups and downs in the last 4 months and this forum has been my saving grace, thanks to people like you.

Everybody's previous posts expressed very eloquently a lot of the same views and thoughts I have. We're all in the same boat, we all need to vent now and then, we're all dealing with a very serious issue and we all try to make the best of it. We feed off each other to try to come up with solutions to make our lives a little safer, a little easier.

Things do get a little emotional at times and a little heated up, but that's because of the nature of the beast. After all, we are just trying to take care of our loved ones or of ourselves in some cases. Sometimes we do it by being mad, angry, happy or sad. We try to be positive most of the time, but by the same token, we are realistic and know that the "real world" isn't always a positive place to be, so we get a little angry. I think with allergies it's okay to be a little "fanatical" at times. It gets things done, it gets mountains moved, like Sabrina's law. I'm not very good at standing up to people, but I demanded from my daughter's teacher that she take some serious precautions during a field trip and I made it happen, and I believe I found the nerve to do so by reading other people's posts, including yours, Sil. So I do hope you come to "chat" with us still. :wink:

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