Sometimes, I find myself focusing on all of the negative things related to living with my husband’s HAE. It is easy to get caught up in all of the bad. A coping mechanism that I have recently implemented into my life is to focus on the things within my control. With my husband’s HAE, there are so many things that are not in my control. One thing I CAN control is how I react to any given situation.
I choose to react to living with HAE by surrounding myself with others who can relate to what I am dealing with. I am fortunate to have met many people who, over time, have become what I refer to as “My HAE Family.” This “family” consists of HAE patients, caregivers, and medical professionals. Some of the best relationships result from just a common interest.
I have met such great people while attending medical conferences and HAE informational events. Some live clear across the country! Luckily, we are living in the age of technology and social media, so I am able to reach out to my “HAE family” via email, Facebook, etc….
Sometimes, when I am feeling down, being able to communicate quickly with an HAE “family member” can turn my entire mood back around. I even find myself communicating about things other than HAE. With these “family members” scattered across the country, I feel like I could reach out to any one of them, and be welcomed with open arms. When traveling, knowing that there are people in the area that I can call on if I need to gives me a sense of security and safety.
I am so thankful that something very good has come out of something that can be very frustrating and scary. Without HAE in my life, I wouldn’t have my “HAE family” in my life.
How has the HAE community helped you? Leave a comment below!
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