Up until about five or six years ago, I still didn’t say much about HAE. Then, I started to have many more HAE attacks and missed work on a regular basis. I decided it was time that more people knew about my HAE.
I talk about this moment in a previous post, but one day I had a facial attack that started in the morning at work. Instead of hiding my attack, I showed my co-workers what HAE was capable of. It was very impactful.
As the years have progressed, I don’t really have trouble anymore telling anyone about HAE. I simply tell people that I have a very rare disease that causes me to swell. I also encourage anyone who has the possibility of having HAE to get tested.
I would rather just be upfront about HAE when it comes to my personal life. By becoming more vocal:
- I feel it causes less grief. People understand why I may have to leave places or plans at the drop of a hat
- It’s my hope that people don’t have to feel uncomfortable with my HAE attacks if they know a bit of my situation
- I figure it all helps in spreading awareness
I feel being upfront—honestly explaining my condition and not hiding my attacks—can bring about more understanding, compassion, and knowledge.
Who do you think should know about your HAE diagnosis and why? Please leave a comment!
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