HAE is Not Just a Physical Disease: The Mental Battle Inside My Head

Many people know of hereditary angioedema (HAE) as a disease that shows itself physically, but what they don’t see is sometimes the mental battle can be just as tough.

The day to day

Every day I wake up I think, “Is today the day? Will I experience my first throat swell? Do I feel okay right now?” During the day it is, “What is that feeling in my foot? Am I swelling? My stomach feels a little weird - do I need to do an injection just in case? What's that tickle in my throat?” Or when I go to sleep, it becomes “Will I swell in the night and not wake up tomorrow?”

The invisible loop

This is an everyday thing. A lot of the time, I keep these thoughts to myself. Whether I do that so that I don't sound crazy and get labeled a hypochondriac, or because I don't want to be a burden to others, I’m not sure. But what I do know is that these thoughts are always in the back of my mind. Almost like they are on a loop, like a recording playing over and over. It’s like being constantly on edge, wondering when I'm finally going to fall off of it. It doesn't matter what I'm doing, or who I'm with, they're always there, and unfortunately, I don't think they will ever go away.

The thing is, sometimes I DO feel crazy, because sometimes the little feelings I'll get, that I'm so sure about, that make me wonder if I am having a swelling episode, ARE nothing. But other times, they aren't, and they are very serious things that I have to treat right away or I could end up in the hospital or at the very least in bed for a few days.

As if all of those thoughts weren’t enough, I also have to constantly weigh out if something is my hereditary angioedema or a completely normal unrelated ailment. If it is completely unrelated, is it going to make me have an episode anyway?

The power of shared experience

People who don’t have this disease may be able to sympathize, but they will never fully understand the mental battle it is every day to have a disease that can be so sporadic and so temperamental, and I am glad for them; I wish no one did understand, because if they did understand, it would mean they are in the same boat as me.

At the same time, selfishly, I am grateful that I am not the only one and that there are others out there just like me because it makes me feel not so alone. Despite the fact that HAE is a rare disease, there are a lot more of us who have the condition than you would think. I have not met one single HAE member that is not willing to chat or help in whatever way they can. So whenever I am struggling with these thoughts, or I am unsure about something related to my HAE, I will reach out to another HAE member and try to troubleshoot.

Because the physical and mental load of hereditary angioedema is so heavy, it is so important to find a community. People who aren’t your doctors, but ones who have the same condition and can help support you.