Things I Do Because of My HAE

The other day someone made a comment to me that made me realize something: I do a bunch of things without thinking about it, BECAUSE of my hereditary angioedema (HAE). A lot of the things might not be obvious to others, some of them yes but a lot of them not.

The comment that opened my eyes

The comment my friend made was, "I recognize you by your shoes; you always wear those ones." I remember looking down at my feet and realizing she was right. I wear my slides whenever I have to wear shoes. That's mainly because they are my least constricting shoe I own and I'm terrified of my feet swelling again. For me personally, most of my swells are in my feet, and they are incredibly painful. And I don't know what it is but after that happens, I can't stand the feeling of wearing anything enclosed on my feet. It's awful.

Subconscious habits and constant mirror checks

That one comment made me realize I have a bunch of little quirks like this.

Kind of going along with the shoes, I also cannot wear tight clothing. And I don't even mean tight; I mean normal-fitting clothes. Most of the time they will have me thinking I am swelling even when I'm not just because of the feeling. I feel constricted unless I'm wearing oversized things and I've always been this way, even before I was diagnosed.

Another thing I do is constantly looking in the mirror or at my front camera on my phone - to make sure my face looks "normal". If I have the slightest feeling in my face that's a little weird, I'm looking in something to check. And even checking doesn't convince me because I will convince myself something is the tiniest bit swollen even if it's not.

Which leads me to the next thing, I ask my husband almost every day if my face looks weird. Or normal. And then I feel annoying when he says no. Hereditary angioedema has made me the worst over thinker which I’m sure many of you can relate to.

The endless search for early swell signs

And believe me when I say I have done extensive research on my disease, but that doesn’t stop me from Googling every little feeling I get in my body to see if it could be a sign of a swell coming on. It's quite annoying really. And the funny thing is that almost anything could be a prodromal symptom, it just depends on the person. That's what I think makes this disease so hard. It's different for everyone. So although all of us can relate to each other, we also can't completely.

How HAE quietly reshaped my personality

Because of all of these things I do now after my diagnosis, I believe hereditary angioedema has reshaped my personality in a lot of ways. I’m more careful. I think more. I'm more in tune with my body (annoyingly so). I also am more prepared than I ever used to be. I used to never plan. Never really think ahead. But now I have to because I have medications to pack. Things to bring that I cannot forget.