Just the other day, I was sharing my stressed feelings with a friend. She pointed out to me that I need to remember to utilize my support system.
However, I have discovered over the years that I need more than just one support system. The circumstances will determine which person or group of people I turn to for support. So, depending on the situation, I may call on:
- People living with HAE and their caregivers: While people who aren’t directly affected by HAE may be well-intentioned, they can only sympathize, not empathize, with some of the challenges my family faces. Sometimes that isn’t enough to make me feel better. Fortunately, I have met many who have been directly impacted by HAE. These people are “walking in my shoes,” and a simple text message, email, or phone call to a fellow HAE caregiver helps immensely.
- My parents, siblings, and close friends: They are always “on stand by” in case of an emergency. I call upon them to assist with doctor’s appointments or trips to the ER. I know that I can call on them whenever I can’t be present myself, or even to keep me company while my loved one deals with an acute HAE attack.
- My medical support system: Over the years, my husband and I have worked very hard to stay involved within the HAE community, ensuring that everyone on our healthcare team is right for us. We are so lucky to have a wonderful allergy/immunology doctor that is well-versed in HAE and treatment options. We are also lucky to have the support of our OnePath® Case Manager to help with the insurance access and coverage issues.
When times get tough with HAE, I call upon my support systems. Who do you call? Leave a comment!
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