Coming to Terms With Caregiver’s Guilt

By the time my husband and I added a set of twins to our already rambunctious 5- and 2-year-old, family and friends appropriately named our house “the Circus.” Sure, there were families out there with way more kids than we had, but our reality was what mattered.

Everything seemed to be in constant motion from the moment our twins were born. Aside from school and family activities, with that many kids, that close in age, we were always dealing with somebody’s ailment. Someone’s nose was constantly running, someone’s throat was always sore, and someone was eventually going to get a stomach bug. I longed for a day when every “I don’t feel good” wouldn’t result in an unplanned doctor’s visit.

Our second-born, affectionately nicknamed Ladybug, constantly had us in and out of the pediatrician’s office around age 5. It would start with pretty standard things like stomachaches, or “My throat feels funny.” Eventually, we’d get an appointment, be told that nothing was wrong, and return home with a quiet assumption that maybe it was something she’d gotten into or eaten, or just her allergies.

Recommended Reading

March 10, 2022 News by Marta Figueiredo, PhD

Takhzyro Found Safe, Effective for HAE Over Long Term in Real-world Study

When her visits resulting in vague causes or nondiagnosis became commonplace, I stopped taking her. “I don’t feel good,” she would say to me. So I would try to make her comfortable, give her some ibuprofen, and go about our daily activities.

But the problems only got worse, and her complaints only became more nondescript.

“I don’t feel good,” she said one day.

“What’s the matter?” I asked.

“I don’t know,” she replied. “I just don’t feel good.”

It wasn’t that I didn’t care; I just couldn’t do it anymore. There were three other children in the house, two of which had significant medical challenges that were quite tangible. I didn’t have any more time for Ladybug’s phantom stomach pangs, complaints of tingling hands, or random gastrointestinal issues that weren’t contagious. As a result, each declaration about how she felt was met with less and less urgency.

When she was finally diagnosed with hereditary angioedema (HAE) last year, I spent hours of quiet time researching and studying the symptoms. With each discovery, my heart would seem to break apart. Every symptom or warning sign Ladybug had complained about was on the list. She seemed like a textbook case of an HAE patient.

I felt like a terrible mother. How could I have let her go so long without any help? How did I never put one set of symptoms with the others? Each new day that helped us understand her disease better just made me feel worse about all that I’d missed.

As a caregiver of someone with a rare disease, especially of a child who may not articulate the specifics of how they feel, I found it challenging to let go of the overwhelming guilt over missing all the signs. Truthfully, it takes awhile to reconcile that the reason we may not have caught it is the exact reason they call it “rare.”

When talking to an HAE support group with the Hereditary Angioedema Association, one of the moderators recently spoke with me about the suffocating guilt I felt. She assured me there weren’t necessarily better internet searches I could’ve done or better questions I could’ve asked. The long road of discovery that led to her eventual diagnosis was quite normal under the circumstances.

One of my favorite quotes is by Umar Ibn Al-Khattab, who said, “No amount of guilt can change the past, and no amount of worrying can change the future.” This is something that all caregivers should remember.

It’s easy to scold myself for everything I missed, but that wouldn’t do me any good. Holding my past self accountable for my knowledge today isn’t fair. What is important is to continue to find the resources and information necessary so that Ladybug’s worst days are behind her.

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.