As a result of losing my sense of self in the face of HAE, I have had to deal with a lot of anger, resentment, and guilt…
Even though I was familiar with HAE from a young age because of my family history, not many doctors knew much about the disorder or could recognize the various forms HAE attacks could take. It seems they either thought anything could be a symptom of HAE, performed a bunch of expensive tests and procedures to find an answer unrelated to HAE, or brought on the dreaded, "It's just anxiety." I began to wonder, Who am I? Am I really sick?
This was the beginning of my anger and resentment. It seemed so unfair that I had to have this strange disorder that so often made me feel like an ineffective weakling.
When I wasn’t feeling anger at my condition, I was feeling guilt for the effect it had on my family.
How did I overcome these feelings? Some were resolved through increased understanding and maturity on my part. Getting to know other people with HAE also lessened the anger and resentment. I realized I was not alone and could work alongside others with HAE to spread awareness.
The guilt? Yes, that was tough to overcome, but I have to remind myself there’s no reason to feel guilty. I never once "blamed" my mother for passing HAE on to me. It wasn't her fault! So I shouldn’t blame myself either.
Each of my children and grandchildren (with or without HAE!) has been a blessing. I face my challenges for them, and I have reclaimed my sense of self. It's what we do with what life hands us that matters. My family and I, and many of you, have been handed HAE, but we will face our hurdles!
How do you approach hurdles with HAE? Let me know in a comment below!
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