The Tale of Two Truths

Of all the places to have a meltdown, mine happened in the parking lot of the public library.

Last summer, my daughter, whom we affectionately call Ladybug, was hospitalized several times overnight due to hereditary angioedema (HAE).

When she was at home, I had to administer multiple IV sticks to deliver emergency doses of the treatment Berinert, in between preventive subcutaneous doses of the therapy Haegarda every three or four days. Ladybug’s fear of needles triggered her anxiety, which may have caused additional flares. By midsummer, we found ourselves in a vicious cycle.

I was exhausted. I had no idea that being a caregiver to someone with a rare disease would take such a toll on me. In addition to navigating my daughter’s HAE, my husband and I have three other children, and our days are jampacked from about 5 a.m. until bedtime.

Now, our days were frequently being interrupted, resulting in missed breakfasts, overlooked lunches, and late dinners. My husband, who works remotely from home, would bounce between his office and the rest of the house to take care of our children while I stayed with Ladybug at the hospital.

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Given the constant driving, the repeated explanations we had to give ER doctors and nurses every visit, and the sleepless nights, both Ladybug and I were experiencing a type of fatigue I didn’t think was possible. But when I would hint at how I felt to someone outside our family, they usually would respond with something like, “Don’t worry, it’ll get better.”

On one of Ladybug’s rare good days last summer, I craved the simplicity of a “regular” task. My solution? A trip with the kids to the public library.

For a few short hours, they wandered around finding their favorite books, reading in quiet corners, and checking out their favorite selections. Everything seemed normal. But in the weeks that followed, Ladybug was admitted to the hospital and had several doctors’ appointments. Before I knew it, the library books were late.

So, there I was, sitting in a parking space at the library, gripping the steering wheel, overwhelmed at the idea of returning almost 10 overdue children’s books and young adult novels. Although her diagnosis was recent, we had been dealing with the ups and downs of HAE for nearly five years. And in that moment, everything was just too much.

“It’ll get better,” I thought. But nothing felt better, and there seemed to be no end in sight.

I’m not sure why I answered my cellphone, but when I did, a health advocate from the U.S. Hereditary Angioedema Association (HAEA) was on the line. Although she had called to check on Ladybug, she asked me how I was doing.

As soon as the question left her mouth, my tears started to flow. I confessed to her how overwhelmed I was and how difficult caregiving and just being a regular mom were. I lamented how upset I was that everything seemed so unpredictable.

But my biggest issue was people telling me that everything would be fine. Everything was not fine!

By the end of my rant, I tearfully confessed my guilt about the way I was feeling.

The HAEA advocate listened intently, and then said something that changed everything: “There are two truths,” she said. “Things will get better, but it sucks right now.”

That was it. That one statement made me feel seen.

As caregivers, we often run into people who aren’t familiar with the journey we’re on. Although they mean well with statements like, “Everything will be fine,” it doesn’t make us feel good about our situation. We know about the research to improve therapies for HAE patients, and we know scientists are finding new ways to bring relief to people like Ladybug. But it’s also OK to acknowledge that we may not be in a great place right now.

There are times when we are in a great place, and there are other times when we live the two truths.

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.