Having a primary immune deficiency can be very isolating.
This was the only thing going through my mind as I infused tonite, laying alone in bed with my laptop in my lap writing a review on a journal article for immunology. “CVID is isolating.” There I was, alone upstairs, snuggled up in my blanket and hooked up to a Freedom 60 pump, missing human interaction of others who were going through it just like me.
Diabetes has the online community, and it’s prominent and in your face. Do a Twitter search for “diabetes” and all sorts of things come up. Do a search for “immune deficiency” and you find links to press releases and anti-Jenny McCarthy tweets. Which are all awesome, don’t get me wrong, but there isn’t that sense of community that people with diabetes has.
Of course, that is just my impression, and likely has more to do with the fact that I’ve got a touch of social anxiety and don’t like to initiate conversation, even online. I follow people on Twitter, but I don’t tweet them, I don’t start up a conversation. It seems to me that people just don’t talk about it, It’s not like diabetes where the information gets plastered all over your info. It’s like a primary immune deficiency is the dark secret everyone hides in their closet with the dusty skeletons.
I completely understand the desire to live a normal life, to continue on and pretend like nothing’s wrong. I get that it’s relatively easy to forget that you have an immunodeficiency, since taking care of it really doesn’t consume every moment of your day. I just wish that there was the same kind of vocal group out there that diabetes has.
I could join an online community, sure. There are plenty of message boards out there, and I know that there are many devoted to primary immune deficiencies. I can’t be the only one online who understands the wooziness after an infusion due to the Benadryl and the welts consisting of pooled immunoglobulin. I know that I’m not the only one online right now with gauze taped to their abdomen. I know I’m not the only one around who knows the importance of hydrating and knows that it is the best way to prevent the Ig migrane. My question is, where are they all?
According to Twisted Sifter, a group of zebras is called a “zeal.” I don’t care what they’re called, but I need to find a zeal. Zebras work best in groups and their camouflage works best when there’s more than one around. So, immunodeficient people of the world, let’s band together. Let’s form ourselves a zeal and become more strong. Zebras live in zeals because they will live longer that way – why wouldn’t the same be true for us?