On having an “invisible” illness.

Not all allergic reactions are visible. In fact the worst and most dangerous of my allergic reactions are *not* visible, because they involve the inside of my throat and mouth, my lungs, and my brain. You can’t see any of those things, but I will stop breathing all the same.

Many folks I know who have life-threatening allergic reactions experience only neurological or gastrointestinal symptoms which are in fact incredibly dangerous if allowed to continue, but not in any way visible. Getting people to understand what they go through and believe that the precautions they take are necessary and not just paranoid or attention-seeking is incredibly difficult in that kind of situation. Even well-meaning and otherwise reasonable loved ones will often conclude hypochondria, except that it *isn’t* hypochondria if you are actually sick!

Once upon a time, three years ago now, I had a severe and visible allergic reaction to the tiniest trace of corn derivative. It actually didn’t turn out to be that dangerous (never progressed into any internal issues), but it *could* have. At the time I took pictures because I thought it was weird and actually kind of hilarious in a sick way, but it turned out to be a very good way to get people to understand that yes, this allergy is real, and yes, it is possible to be *that* sensitive.

angioedema

If you or a loved one are an allergy sufferer, and have a visible reaction, I highly encourage you to document. Obviously do what you need to do to assure your safety first, but get pictures if you possibly can. It may come in handy later.

3 thoughts on “On having an “invisible” illness.

  1. I agree about taking pictures! I have plenty of my hives, duck lips, and swollen eyes. The pictures of hives I brought on my phone was about the only thing my first doctors had to say that there was actually something wrong with me. And since I look well most of the time, having pictures (sad as it is to even need them) can be used as proof that there are times I am not well.

  2. Is it possible to chat with u? I’ve developed a pretty crappy corn allergy in the past few years n man its absolutely driving me crazy. Although I have learned many things. You just cant learn enough.Maybe we can share some knowledge. Thanks

    • Hi Doug. I agree that this allergy is pretty crappy, and there is a lot to learn. Rather than chat directly with just me, I think you would get a LOT more help out of joining some communities of other corn allergics. Here are a couple:

      https://www.facebook.com/groups/cornallergy/

      http://forums.delphiforums.com/avoidingcorn

      The current membership count for that Facebook group is over a thousand people. Two heads are better than one, but a thousand heads are better than two. 🙂 There are also a few other allergy support Facebook groups you can find if you search around. You don’t even have to post there, can just read and learn. For specific questions on topics I post about, you are welcome to leave comments on relevant blog posts and I am very good about responding.

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