Learning more about HAE means learning how to ask questions
Being unsure about something doesn't make me a bad caregiver
“That is the right question,” Alfred Lanning’s hologram smirks. Then, just as suddenly as his image appears, it vanishes into a small projector, leaving detective Del Spooner confused about what he’s just uncovered.
In the 2004 sci-fi blockbuster “I, Robot,” the phrase above doesn’t bring the affirmation that Spooner, played by Will Smith, hoped for. After discovering the fatal demise of Lanning, a doctor and his mentor, from an apparent suicide, Smith’s character finds a holographic program built to answer inquiries about the man’s death. Initially, the automated program seems to be a dead end. However, Spooner soon realizes that to get to the bottom of things effectively, he must ask the right questions.
Soon, he’s thrown into a high-octane thrill ride with a humanoid robot, an army of murderous droids, and a somewhat shocking reveal of the real antagonist.
Ultimately, one of the takeaways from the movie is the realization that Spooner wouldn’t have been able to solve the case if he hadn’t asked the right questions.
It’s interesting how plot points like this one can occur in real life.
The worst questions are the ones we don’t ask
When our daughter, whom we lovingly refer to as Ladybug, was diagnosed with hereditary angioedema (HAE) in 2021, I assumed that everything I needed to know, other than a few questions here and there, I could find with common sense or avid reading.
If her doctor informed us of the development of a new medication, I’d research it. I’d read and cross-reference if an article came out about prodromes or other symptoms. If a nurse came to train us to administer Ladybug’s preventive or emergency medication, I’d take notes. There would be no reason to ask questions, and I was proud of that. No questions meant I was an excellent caregiver fully invested in Ladybug’s care.
But after we settled into our routine, I started to have questions. At first, I tried to ignore them or did my best to dive headfirst into research. Eventually, the questions would reemerge.
Why does she still complain about her medication burning?
Why does she tend to throw up when she has an intestinal flare?
Why does she go through periods when she seems to have swells back to back, and then nothing?
The answers I always went with were that I wasn’t researching or reading enough, I was administering her medication incorrectly, or she was doing too much after her flares were over.
Imagine the shock when I learned that none of that was true.
Last week, I had the opportunity to speak with several people living with HAE. When one of them happened to mention how much medication burned when it was administered, and I realized it was the same medication Ladybug was on, my mouth dropped open.
Not only did other HAE patients chime in to agree, but one of them explained the science behind why. Soon I was engaged in informative conversations that explained all of the doubts I had in my head.
And where did those doubts come from? Unanswered questions.
But I realized my unanswered questions weren’t the doctors’ or nurses’ fault. I’d allowed my fear of looking like a bad mom and caregiver to keep me from asking.
As caregivers of people with rare diseases, it’s important to remember that asking about things — no matter how confident we may feel — makes us better at what we do.
It’s OK if I look unsure or unknowing about all things HAE. One of the greatest lessons I learned last week was that the worst questions are the ones I don’t ask.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.
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Comments
Linda Fredericks
Why does she go through back to back flares and then nothing?
Danita LaShelle Jones
I dare not dive into a scientific or medical explanation because we're still learning. Unfortunately, it's just the nature of her journey with the disease.