My husband, David, had known about his diagnosis of HAE for years, but nobody told ME about it until after we married. I was blindsided. I knew he frequently didn’t feel well—he would sleep a lot, which apparently was his way of masking his attacks. So the first time I witnessed an HAE attack, I felt scared and helpless. Lying on the bathroom floor was my husband: a grown man in tears from excruciating pain. He described it like “being stabbed with a sword and the sword being slowly turned.” All I could do was cry.
David had spent so many hours in hospitals when he was growing up because of his HAE. So, by the time he reached adulthood, he preferred to “suffer at home.” And, because of his HAE, David’s parents hadn’t allowed him to play contact sports and, on some level, David was ashamed. He had no desire to talk about HAE or do anything proactive to change his situation. Once I knew he had HAE, I wasn’t even allowed to tell anyone. That became a bone of contention between us. I wanted things to change.
That change came when another member of our family was diagnosed with HAE. I couldn’t keep David’s secret any longer.
As you can imagine, David was not happy when I told people (even though he understood why I’d done it). But he did become a little more proactive about his health. Over time, he realized that no one was judging him and that this disease was nothing to be ashamed of. It was not a result of some indiscretion; heck, it was how he was born.
Now that we’re no longer hiding HAE, I feel compelled to share my journey. I want other caregivers to know they’re not alone. It’s okay to feel anger, frustration, and sometimes guilt. But I’ve learned we still have the power to stay informed and to stay connected. We can refuse to let HAE define us.
Please comment below and let me know what you’d like to read about. When it comes to HAE, I know (and now David does, too) that more communication is a good thing.