For me, hereditary angioedema can be difficult to handle at times—sometimes it can seem impossible, especially since I’m not the only one in my family with HAE. Growing up, both my mother and sister dealt with HAE attacks, as well as my favorite cousin. Standing on the outside looking in, my life could probably look pretty chaotic. But, through my experience, I’ve learned a couple things—specifically about the best ways to handle being one of many members in the family diagnosed with HAE.
- Maintain a positive attitude
You might have heard the expression, "If Mama ain't happy, ain't nobody happy." Well, I think that can apply here, too! Let me explain. You may not be the "Mama" with HAE, but maybe you are a dad, an older brother, or a sister with HAE. Having HAE myself, there are two attitudes I can use to face it—a negative one, or a positive one. It has been my experience that a positive attitude works for me. And I often hope that when other members of my family see me handling my challenges in a positive manner, they might be more likely to be at ease and feel confident when facing their own HAE attacks. Likewise, my negative reactions may have an impact. If I “ain’t happy,” that negative attitude could spill over and affect others. So, truly, I believe I almost have a duty to try to find the best plan of action to help deal with my HAE attacks. For me, that requires a positive attitude.
- Accept support
Support has been very important to me on my journey with HAE. Ultimately, my family members understand me better than anyone else in the world, especially those who are also diagnosed with HAE. They "get it" when I’m tired, emotional, or cranky when an HAE attack is coming on. They understand how much I hate going out in public with, for example, a slightly swollen lip. I can talk to them about my painful abdominal swells and feel like they understand. But most importantly, my family members love me, and that has helped me tremendously throughout my life with HAE.
I don't mean to make HAE sound easy or like it's not a big deal. Having HAE can be serious, and I know, from my experience, having another family member diagnosed with HAE can bring sadness, worry, and even fear. When I was younger, watching my mother and sister suffer from their HAE attacks and not being able to help relieve their pain was frustrating for me. But if I think about it, every single family faces some kind of struggle. Ours just happens to be a rare one, and together, we can do our best to get through it.
How do you cope with HAE in your family? Leave a comment below!
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