My husband, David, and I have been married for nearly 15 years, which translates to me having attended many functions alone. My husband says that stress can be a trigger for an HAE attack. Unfortunately, nearly every event comes with its fair share of stress—good and bad.
I remember when we first explained HAE to our family and friends; we did so in part because I was running out of excuses to explain away David’s absences. You can imagine how people start to become suspicious when your “other half” never comes around. Some of my friends and family straight out asked if they should even bother inviting both of us. They actually felt that David didn’t like them, and therefore, didn’t want to attend.
My friends and family who were not living with HAE as part of their lives sometimes failed to realize a few key things about David’s and my life with HAE:
1.) HAE can be sudden and unpredictable—David can usually feel an HAE attack coming on. What he can’t always tell is how suddenly the attack will progress or how severe it will be.
2.) I don’t enjoy feeling like I have to apologize—Sometimes I get tired of explaining David’s absences; I get tired of apologizing. Why should I be apologizing? I didn’t cause this or do anything wrong. And David did not ask to have HAE.
I realize now that I can’t get frustrated with others, because sometimes even I feel disappointed and angry about the cancellations. When that happens, even I have to remind myself…
3.) It’s not personal; it’s an HAE attack—There have been many holiday events that David spent home alone in bed while the kids and I carried on with our plans.
Even though I have explained his condition to our friends and family, their feelings get hurt when David is not in attendance. What can be hard for them to understand is that David doesn’t want to miss the event or spending time with family and friends. It’s his HAE that isolates him. What David hates now is how an HAE attack can very quickly turn our plans upside down.
When I RSVP that four will be attending, I always hope I mean FOUR, but even if we can’t make our plans work, as my friends and family become more informed about HAE, I have confidence that one day I won’t feel the need to apologize if four becomes three.
How do you and your loved one handle cancellations due to HAE attacks? Leave a comment below!