Thursday, January 23, 2014

Musings on the Suddenness of Death and Hiding Food Allergies

I'm kind of a mess today.

I was all set to write a perky post about discovering my former supervisor has food allergies! I shared the news this morning with her that my son had passed the pea challenge. She, in turn, shared that she has an anaphylactic nut allergy, autoimmune urticaria and idiopathic anaphylaxis. Who knew!

I launched into several minutes on FAHF-2 and how it will benefit her if the researchers are able to bring it to market. I could see her eyes start to glaze and her uneasy glance around the office. Even when you have these conditions  perhaps especially when you have them  you have to be careful talking too much about them. People judge.

The reason I'm a mess, though, is that I sit right next to a guy who died today. No, he didn't die right in front of me. It happened off-site, at a hotel where he was staying overnight. (He commuted from a town some distance away and kept a room at a hotel for nights when he didn't drive home.) He and I had also had conversations about allergies, as his wife has an anaphylactic allergic to milk. He referenced it quite often, brought food from home she couldn't have, wanted to share the pain and frustrations...but also not. There was always a point where he would shut down and stop talking.

It's so hard to get what we need. We need to talk about this stuff. And yet, almost all the adults I've ever talked with who have an allergy seem to hide that fact from others. In almost every case, I've found out by accident because of some random passing comment that only someone "in the club" would understand.

And now he's dead. Probably a heart attack.

My thoughts have been so random today. I thought "I should go to the funeral and take her an Epi-Pen. I know he said she wouldn't carry one. Now that she's the only parent, she really needs to have one." I thought "I should send her that box of milk-free chocolates for Valentine's Day that he isn't going to be able to send her now. I'm the only one who knows where to get them."

Of course that would all be really weird and inappropriate. Food allergies are not a secret club. I don't get to claim some special bond with this guy just because I had those conversations. I especially shouldn't be talking to a woman I don't even know, about her health condition that she may not have wanted her husband to share.

Relief and shame, all at once. It's what I think adults feel when they recognize someone understands their food allergy. They don't really want to talk about it, but they need to. It's sad to watch the conflict, and to see the self-censorship win almost every time.

I wrote a long, complicated post about the reasons food allergies attract this stigma. I promise that I will edit it and post it at some point. But today, I just wanted to reflect on how sad it is that the stigma is there.

I'll miss my work buddy. I'll miss that possibility of sharing and support. And, of course, I will think a lot over the coming days about the fleeting nature of our lives, and how we need to value every moment with our families.

We need to just have those supportive conversations and stop caring so much about what the judgers of the world think. Time isn't limitless.


Follow me on Facebook or Twitter  

5 comments:

  1. Oh that is so sad! But I totally get where you are coming from. I get so frustrated sometimes because if I mention allergies, you'd thought I mentioned that I have the plague. People get really weirded out about the topic. And I feel like I need to talk about it but I can't tell just anyone. Luckily I have close friends who don't mind hearing me talk about my allergies.

    ReplyDelete
  2. Sending you a big hug from someone who totally gets it.

    ReplyDelete
  3. maggie.danhakl@healthline.comFebruary 6, 2014 at 2:42 PM

    This comment has been removed by a blog administrator.

    ReplyDelete
  4. Just want to cry. Sometimes i want to talk about it and i can see how not interested they are. Why is it ok for me to stand there and listen to them speak about their child but when i speak about my child and his food allergies no one interested.

    ReplyDelete

Note: Only a member of this blog may post a comment.