I look back and remember times when my husband was in pain on the bathroom floor from an abdominal attack, curled up in the fetal position, with me desperately needing to leave for work because I had no more paid time off and my boss had no more patience.
When those moments happened, I was fortunate; I was able to call upon my immediate relatives—my parents or my sisters. They could be there for my husband when I couldn’t. And they could be there for me when I personally needed their emotional support.
But as great as they’ve been, sometimes I do feel like we’re becoming a burden for them. That’s where another type of family comes in—my friends.
My husband and I normally don’t stand on the rooftop and shout to anyone that’ll listen that we’re living with HAE. But we’ve learned to trust our friends with this part of our lives and accept the help they so freely offer.
Friends are, after all, family that you choose, and, time and time again, I realize how well I’ve chosen.
Then there’s a type of family that you aren’t born into and don’t necessarily choose, but that’s a gift given to you by circumstance.
For me, that’s my HAE family. My immediate family and friends may be able to sympathize—this part of my family can actually empathize.
Sharing with people who truly understand life with HAE means more than I can ever say.
When I’ve felt isolated in my struggles, I’ve often taken advantage of the many programs that Shire offers. They give people with HAE and their caregivers opportunities to hear from others who are managing life with HAE. There are educational programs—like the Shire Caregiver and Patient Ambassador Programs and Ambassador Health Programs —as well as the You, Me and HAE Mentor Program, which lets you talk to someone living with HAE over the phone and get answers to your questions.
I’ve personally met so many wonderful, unique people who have been impacted by HAE. And, while HAE affects each person differently, we may all experience fear, anger, frustration, uncertainty, anxiety—and hopes and joys.
When we’re put on this earth, we don’t get to choose our journey. What we DO get to choose is how we react during it. I choose to react by valuing and respecting my family. All of my family.
How do you choose to react? Comment and tell me about your journey with HAE!