The frustrating conversations with people who don’t understand HAE

For this writer, lack of understanding is the hardest part of being a caregiver

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“What?” the woman exclaimed a little too loudly. Her proximity to me made the shrillness of her voice even more unappealing.

I shrugged and smiled as I braced myself for what I knew would come next.

The massive barbecue was in full swing, and after several minutes of being in line, I had finally made it to the serving tables of delicious food. Although skipping over the potato salad didn’t seem like a grand gesture, the woman behind me disagreed. To make matters worse, I was a Southerner who had just confessed that I wasn’t a fan of a Southern barbecue staple.

I was used to quieting these types of events with food aversion confessions. While my dislike for potato salad drew surprise, I seemed seconds away from torches and pitchforks once I added watermelon and pound cake to that list.

“You don’t like potato salad?” she managed to ask more loudly. Then, she leaned in toward me with almost an immediate tone shift. “That’s because you haven’t had my potato salad.”

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Oh, the relief that comes when an educated expert arrives to help

There it was. The haughty declaration that most individuals give when they discover the person they’re talking to doesn’t like a particular food. It was either improperly prepared, missing an ingredient, or served incorrectly.

Unfortunately for this stranger, I was on the tail end of a long day and completely over being told what I would like.

“You’re right,” I quipped. “I haven’t had yours, and I won’t because I don’t like potato salad.”

Looking back, I realized my irritation with this woman went far beyond food.

Accepting the existence of rare

When our daughter, whom we fondly call Ladybug, was diagnosed with hereditary angioedema (HAE), I was at the receiving end of some pretty outlandish declarations from people who didn’t understand the chronic illness.

Whenever I would describe what it was like navigating one of Ladybug’s painful intestinal flares, I received advice like, “Well, have you tried a hot or cold compress? That works wonders.”

Or if I attempted to discuss that sometimes we don’t know what triggers one of her facial swells, I would often hear, “You know, a deep clean of your house would probably do the trick.”

I even found myself in a small argument with someone when they insisted that because I didn’t know everything they put in medications like Berinert or Takhzyro (lanadelumab), I could be exacerbating Ladybug’s issues.

So, by the time I was standing in line, avoiding potato salad, and a woman insisted that I really didn’t know that I probably liked something I’d never liked my entire life, I snapped a little.

As a caregiver to someone with a chronic illness, some of our worst moments aren’t hospital stays, medical setbacks, or arguments with insurance companies. Our worst moments are fruitless conversations with people who insist we may not be doing all we can to help the loved one we care for. The most frustrating discussions I’ve found myself in were with people insisting that our research wasn’t thorough enough, we still hadn’t found the right doctor, or that the disease, which they would assure us was curable, was just misunderstood.

At the beginning of Ladybug’s official diagnosis, I longed for someone to admit that they had no idea what HAE was and seek to understand it better. Sometimes, that’s what most caregivers want: an admission that the average person doesn’t know what this disease is or just a listening ear.

Occasionally, I still find myself in “potato salad” conversations. Although, admittedly, I have become slightly more patient with those who insist I haven’t done everything I possibly can to like it. But I know it’s because, in their own experiences, meeting someone who doesn’t like the popular Southern dish is rare. But just like any situation that seems rare, if they go to more barbecues, they’ll eventually find more people out there just like me.

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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