Living with HAE and HAE attacks, I have been forced to cancel plans on countless occasions. Although it can be terribly frustrating, I have come to accept the reality that attacks happen, and they don’t always cooperate with my schedule.
My journey with HAE has not been an easy one, but through the years, I’ve learned five key lessons that led me to finding peace with my plan-canceling:
- Theme parks aren’t going anywhere
The night before I was to travel to a famous theme park, I found myself suffering from a severe abdominal HAE attack. I was crushed that I would have to miss out on the trip. But my mother came to my side, took my hand and reminded me that the park wasn’t going anywhere. Just because I was missing it then didn’t mean I wouldn’t have an opportunity to go on my favorite rides in the future.
- It’s okay to say “bye” to non-supporters
For a great deal of time after one particularly embarrassing incident—involving a date, an abdominal attack, and a restaurant with “out of order” bathrooms—I became overly cautious about making plans. Let me say it’s not worth it to be afraid of how people will react to me. If a date or friends don’t stick around, I’ve learned that I’m far better off without them. It’s more important to surround myself with people who truly care for me and stay with me through the good and bad!
- My cat didn’t hide my car keys!
Being dishonest does a disservice to everyone. For me, any excuse for canceling—surfing injury, rogue jellyfish attack, babysitting a pack of poodles—seemed better than feeling self-conscious about constantly talking about my HAE attack symptoms. I’ve come to realize that I don’t need to give graphic details, but honesty and sincerity are my best tools for canceling plans the right way.
- Helping others help me
HAE is a complicated, rare disease, and the people who care about me want to find out more. I make sure to invite my loved ones to Shire’s live educational programs, including the Shire Patient and Caregiver Ambassador Programs, and Ambassador Health Programs, to help them learn more. I’m proud to spread HAE awareness when I can, and if friends and family know what an HAE attack is and what living with this condition is like, they are far more likely to understand my cancelations!
- I’m not alone
Remember: There are other people with HAE out in the world who might be canceling plans, too! After learning from others living with HAE at events like Shire’s educational programs, I have gained insight that lets me put my canceled plans into perspective.
With these five lessons, I feel more confident that, even with my canceled plans, I’m managing my life with HAE!
What do you do when you have to cancel plans because of acute HAE attacks? Leave me a comment!