In my experience, hereditary angioedema (HAE) is an unpredictable disease. Sometimes, it seems like attacks can happen whenever they darn well please. For that reason, it’s good to have a plan in place to help you prepare for the uncertainty of HAE attacks.
Has anyone faced doctors who doubt or don’t understand your hereditary angioedema (HAE)? Or does anyone else identify with holding your stomach during an HAE attack, putting on a happy face so you won't ruin your family's fun? How did those moments make you feel? I know how I felt—alone!
For a long time, I wasn’t very open to talking about my hereditary angioedema (HAE). I didn’t want anyone to wonder what was wrong with me or treat me differently. I felt like I had no one to talk to who could possibly understand what I was feeling both physically and emotionally. Plus, I didn’t really understand how HAE could affect me. I felt very alone. But I soon realized that, by spreading awareness, I could help not only myself and my family but the larger HAE community.
Once learning of my husband David’s disease, I had a decision to make—allow his hereditary angioedema (HAE) to dictate our lives or dive in headfirst and do my best to support my husband. I choose to support David for a number of reasons, but mostly for the simple reason that I care. He doesn’t always verbalize his gratitude, but I know what my support means to him. I can tell that he values my support by the way he trusts me to help him.
Like unwelcome, unpleasant party guests, I noticed that hereditary angioedema (HAE) attacks have a tendency to arrive when you least expect them. They don’t care if I’m at work, school, on vacation, or enjoying a fabulous night on the town—HAE can crash any get-together. It would be easy to let the fear of an episode prevent me from going about my life, but I don’t let it! I just started wearing clothing that makes me feel comfortable and confident!