Tuesday, August 26, 2014

Identifying as the Allergy Family



If you knew us in real life we would be "that family with food allergies."  Most people know *of* us before they've actually been introduced to us.  I feel like we walk around with a tattoo across our foreheads that identifies us as the food allergy family.

Why this is good
  • People never forget us
With our little entourage of 5 stair step kiddos and our larger than life food allergies, we are pretty memorable.  Thankfully this means that people immediately recognize us and our kids and connect us with food allergies.  This helps us keep our kids safe.

  • People heighten their awareness when we are around
Because we are apparently so unforgettable people are mindful of what they are eating or serving when we are around.  Most people see us and their immediate reaction is to remove food or to keep food away from us.  At least they get the message and give us a wide path.

  • People are educated about food allergies through us
We have the privilege of being the face of food allergies in our community.  When people think of food allergies, they immediately think of us.  And through the educational information that we've been able to share with others, they are more aware and understanding of others with food allergies.  They often refer newly diagnosed friends to us so we can connect with other new allergy parents.

  • People are brought into our food allergy network
Through our food allergy advocacy we often meet other families with food allergies.  It is encouraging to be able to connect with them, share our struggles, talk about our discoveries, and commiserate about our fears.  We have been able to connect with so many other wonderful people and families through our identity as an allergy family. 

Why this isn't good

  • I hate standing out
Our family stands out and not always in a good way.  People seem to panic when they see us coming and quickly hide the food.  When they talk with us the conversation often centers around the food allergies and how to keep our kids safe.  I miss being somewhat normal.  I miss just being able to have a quiet conversation and not have friends and teachers tracking me down to ask food safety questions.

  • I hate when we are treated differently
Yes, we are sometimes looked at as if we are pretty strange.  Some people refuse to accept the reality or severity of the food allergies and they think we are ridiculously over-protective parents.  Others are so worried about the food allergies and our kids that they seem to exist in a state of panic whenever they are near us.  

  • I hate when we are excluded
There have been times that we were not invited to a party or other function because the host didn't know how to accommodate us (or didn't want to make the effort).  It's hard to hear of birthday parties or get togethers that bypassed us.  Some people are honest and tell us they don't know how we could possibly come and others try to secretly overlook our lack of invite.  Either way, it does hurt that we can't participate as much as we would like.  There's no easy answer for including us, but it's heartbreaking to watch the world go by filled with cupcakes, ice cream, and pizza and miss out on the fun and togetherness.

  • I hate when it feels lonely
I've talked about it before and I'll say it again.  The food allergy life can be lonely.  Some people think I'm crazy for my vigilance.  Others don't understand our medical issues.  Still others overlook us because it can seem nearly impossible to find a way to safely spend time with us.  I feel the loneliness and also worry about our children's ability to make friends who are compassionate and understanding.

I'm still trying to make peace with the fact that we are the food allergy family and that our reputation will always precede us.  

2 comments:

Anonymous said...

Even though it has lonely moments (days, weeks, etc) you are doing a great job of making special moments for your family, even if you can't participate in other people's events sometimes. For everything that we miss out on due to my daughter's allergies, I try to have a special night at home, where we might do something that other people would never think of doing instead. And, remember, even though you are sometimes the outsider in a group, you have a special group that you are in too! No, I don't think any of us chose to be in the food allergy group, but I think sometimes that we have special bonds with our kids that other families might miss out on when the things that they do everyday do not get the special attention from mom and dad that something as simple sounding as dinner out gets in our families.

Lexi Henegar said...

Thanks for the encouragement. It can be lonely and we don't choose this life. But there are many ways to make our days special and celebrate together safely as a family!

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