I have felt most alone…
Around Doctors: Picture me—I’m having an HAE attack and I’m in the ER, but the doctors just don’t have the proper information about HAE. There’s not much they can do. Being in a situation like that has made me feel helpless and misunderstood, and that can leave me feeling very alone.
Around Family: Throughout my childhood, I witnessed my mother and sister go through agonizing abdominal HAE attacks. Of course I felt bad for them, but since I hadn’t had any attacks myself, I really didn't understand. I'm ashamed to admit that there were times when my self-centered little self wanted to ask my mother, "Why don't you just take a pain reliever?!"
Not being able to truly understand my family’s attacks was somewhat isolating in childhood, but the aloneness didn’t go away when I started having my own HAE attacks. I remember a summer trip with my husband and kids. The kids were having fun swinging out over the river on a rope. "Watch me, Mommy!" Well, Mommy was watching, from the floor of the open van parked nearby, in between bouts of writhing in pain and vomiting into a pail. I was once again isolated from what should have been a shared experience.
So how did I learn to feel less alone?
Meeting other people with HAE expanded my little world a thousand-fold. I met someone with HAE through the National Organization for Rare Diseases (NORD) registry who still is one of my dearest friends. I also remember talking on the phone to a young man, and it was like I’d found a "brother" three states away!
I hope all of you will find HAE friends who make you realize you are not alone. We may be rare, but think of the wonderful opportunities we have to connect with those who can understand our experiences. Take advantage of informational websites, social media pages, and all the meetings and conferences offered.
What have you found that has helped you feel less alone in your HAE journey? Leave a comment!
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