After living with them for years, I’ve come to a point when I can now remain calm when I’m experiencing the symptoms of an HAE attack.
My wife, not so much. At least, not when we were first married….
Don’t get me wrong; I don’t know what I’d do without her, and we’ve known each other since high school. But she didn’t know anything about HAE until we started dating. And she didn’t grow up knowing people with HAE like I did, surrounded by family members living with HAE. My wife would get nervous and hover around me when I had an attack, which was frustrating for me sometimes because I felt I was managing my acute HAE attacks on my own, and she shouldn’t necessarily be so worried.
Because we had such different reactions to my HAE attacks, I always felt the need to hide my symptoms from her.
Eventually, I figured out that we needed a plan to manage my disease. We needed to talk and find ways to help each other and support each other when an HAE attack happened.
We talked about our reactions to my acute HAE attacks. It was important for us to share our concerns.
These were some difficult conversations to have, but they were conversations that we needed so that we could find ways to understand and support each other.
Over time, my wife and I have learned to build more trust with each other when it comes to my health. It’s still tough at times, but we’ve gotten a lot better at open communication daily.
From my end, I started working on communicating by:
- Expressing what I’m feeling about my health day to day
- Making sure my wife is aware of my HAE symptoms when they start
- Reminding myself that my wife can’t help me if she doesn’t know what’s going on
My wife, for her part, has worked on helping me by:
- Not overreacting or getting overexcited around me when I’m experiencing acute HAE attacks
- Helping keep track of my supply of FIRAZYR® (icatibant injection)—a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older
- Being there to help with anything I may need to manage living with my HAE
And, if we do need additional information and ways to manage my HAE, we know there are resources available, including my doctor and OnePath® Case Manager, as well as Shire's Patient and Caregiver Ambassador Programs and Ambassador Health Programs.
It’s not always easy to be open with each other about our feelings, but it’s worth it for us. It’s the only way my wife and I can know what the other is thinking so we can work toward resolving issues.
How do you go about having open communication with your spouse or healthcare team? Let me know—leave a comment!