The New Food Allergy community.

I keep seeing blog posts talking about the need for the food allergy community to stick together and support each other. Many posts have talked about “scaffolding” and if you don’t agree with something, don’t comment, and keep on “scrolling”–we need to present a “united front”. A recent post talked about how we are all in this together and we need to hold each other’s hands, and that again we should not be pointing out the individual struggles and disparities within the food allergy community.

As many of you know, I created a Facebook group called “Positive Parenting with Food Allergies” about a year and a half ago when it became clear to me that speaking up in defense of people with the other top 8 food allergens that didn’t happen to be nuts and how other allergens are not taken as seriously even by a fellow food allergy parents.  I constantly get messages from people telling me how they’ve spoken up in other groups and they’re afraid or they have been banned or they have been shamed for saying “Hey wait a second, my kid needs to be protected too” or “Your allergies are no worse than mine and they’re not being treated equally”.

We also all know that about a month ago, some people in the food allergy community tried to make a big deal about the fact that I wrote about how all allergies matter for a blog post on a peanut board supported site. The fact is my goal was to educate about our food allergies and not just peanuts ,but a small handful of bloggers tried to make that into a big bad thing. I received no compensation, except the opportunity to raise awareness that other food allergies are equally as dangerous.

So I got to thinking, when I and other old time food allergy parents started out on this food allergy journey over 10 years ago, The world wasn’t like this! Why has this happened? Why do we feel that we need other people to hold our hand through this? Why do we need constant validation? Why do we need to be told what we should be doing or what we shouldn’t be doing?  Why are people posting pictures or reactions asking what to do? This was not there 10 years ago.
10 years ago we didn’t have 504 plans as we do today or if we did they were very limited. We didn’t have people freaking out over the struggles of daily life. We did not have people running on Facebook asking what should I do about this? And “I doubt my doctor” and “I don’t like the advice I was given” and “I need a peanut-free everything environment.” None of this existed.

Talking to other long time food allergy parents, we all have said “Wow! We didn’t have any of this and our kids are totally fine! We were our children’s advocate. We spoke to our doctors. We read books. We found what worked and didn’t work for our kids. We had communication with the school. We spoke up when there was an issue, but also knew we couldn’t ban things. We did not rely on information from other people that we never met to tell us what to do, or what we shouldn’t do.”

Now, people say to me, “but your group is a support group.” Well I never really saw Positive Parenting with Food Allergies as a support group but I did see it as it is a place for us to share our experiences. To say: this is what I’ve gone through, this may be what you’re seeing, and it’s OK to feel this way. Many of us did not see the need for this to be handholding as many in the food allergy community would like. Many seem to have a need to be validated.

The big concern I have seeing all these posts is the big question where does the personal responsibility aspect come into play? 10 years ago it was nobody’s responsibility but my own to advocate for my child. I did not expect the world to become free of both my boys’ multiple food allergens. I knew about limitations. I know how to make him safe as possible, but it was my job to make sure he had safe food at birthday parties and make sure that teachers were trained and knew how and when to give the Epi pen.  It was my responsibility to communicate the needs of my child. It was my responsibility to educate the staff about food allergies and that was fine. It was my responsibility to educate my kids not to take food from anyone else but me. It was my responsibility to teach my children how to read labels early on. It was my responsibility to educate my children to know that their environment would never be allergy free. When you have multiple allergens, there’s no way that you can set up a situation where we’re going to have a free everything and you will be totally safe. It was my responsibility with my kids. We go on trips, and to make sure that the trips were safe enough, if that meant that I have to cook and send up meals, or if I had to call the place in advance, that was my job—I did not consider it anybody else’s job. I did not feel discriminated against.

It just seems to me that the food allergy community has become a lot of complaining and saying the world is against us vs taking control and doing what many of us did, and make the world work for us and figure out how, instead of saying “I’m being discriminated against”, “my rights are being violated” or creating false fear. Many of us who have been doing this a long, long time didn’t have any of these things and our kids were totally fine. In fact, some might be able to manage their allergens better because of it.

As social media has become part of our daily lives I’m afraid we’ve lost a sense of controlling our own daily lives.  We are now relying on social media to tell us things on how we should proceed with food allergies.  We are now relying on social media to tell us things on how we should proceed with food allergies. We must remember, however, that the people on social media do not know the needs of your individual child, do not know your school system, and they do not know your doctor. What one child needs may not be applied to all children with food allergies, and we must remember that.
Perhaps that is why there is this sort of control going on and that anybody who speaks up against certain things in the food allergy community are shot down. It’s not just me. I know of others because if more than one voice speaks up and says “wait a second”, it causes people to think and maybe even do some research. It’s very easy to go by just what people are saying but please, don’t go by what these food allergy groups or food allergy blogs or even some companies are saying. Be your own person! Do your own research, talk to YOUR doctor about your needs.  Teach your children early that they are in control and how to take that control.  And yes, keep speaking up if you see something you don’t agree with.