I have come to learn over the years that my husband, David, while he has many stellar qualities, is not one to share his thoughts. I didn’t find out about his HAE until after we were married—but only because, at that point, he knew he couldn’t hide it anymore. He’s never liked me seeing him suffer—I think, in part, because he didn’t want me to suffer any feelings of helplessness, and also because being a police officer, David just wants to appear strong. He doesn’t want HAE to define his life; I’ve learned that just talking to me about his disease can be hard for him. It took me a while to understand this about David, but once I stopped looking for him to verbalize his gratitude and understood the strength it must have taken him to tell me about his disease, it spoke volumes.
My husband will, though, freely acknowledge to others that I am the one that “runs the show”—the one who keeps the medical records in order, updates the HAE attack journal, makes sure the insurance coverage is in place, and remembers to have FIRAZYR® (icatibant injection) (a medicine used to treat acute attacks of HAE in adults 18 years of age and older) on hand so that we’re always prepared for a possible acute HAE attack. He puts a lot of trust in my role as a caregiver—sometimes I think he gives me too much credit, but it means the world to me.
Ultimately, I do what I have to do to make my family’s life as smooth and enjoyable as possible. I can’t make HAE go away, and I can’t take away the physical pain when an attack occurs. What I can do is offer my support and assistance—and I know it benefits me and my family as much as it does my husband. That is reward enough.
As a caregiver, what makes you feel appreciated? Leave a comment below!
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