One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I had to cancel plans for that evening? I surely couldn’t share that my hands and arms were swelled up like balloons. So, what was I supposed to say? That I was too sick? Sure, that worked for plans that were coming up soon. But what should I say when I had to explain why I might not be attending an event a month from now?
HAE is a very rare and potentially life-threatening genetic condition that occurs in about one in 10,000 to one in 50,000 people. Symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face, and airway.
For me, it’s been a living hell—a routine of swelling attacks, doctor appointments or ER visits, and treatments for an allergic reaction. And guess what? The treatments didn’t work, and let’s speculate why: maybe because I have HAE swells and not an allergy to food or some other trigger.
When I used to tell people I was too sick, they usually assumed I had a cold or the flu. This assumption was fine for short-term purposes and for colleagues or acquaintances. It didn’t work, however, for long-term purposes or for close friends and family.
So, I decided to be open with the people I am close to. I didn’t have a diagnosis yet, but something was wrong. I was sick, and it was possible I could continue being sick for a long time, or until I got a diagnosis and treatment.
Luckily, I surrounded myself with an amazing support system that didn’t need the name of my illness. Just like the support system of Lynn Holman in her journey with an HAE diagnosis. Her HAE symptoms were triggered by an unexpected pregnancy.
Click here to read more.
My journey mirrors Lynn’s experience. And we all know all too well the feelings of security and empowerment that come from living with a mystery disease and reading or hearing about someone on the same path. It’s a good read, so go click.