How to Embrace the ‘Yes, and’ With Chronic Diseases

“The page you’re trying to access is no longer available.”

The sentence stared at me like the ominous indictment I knew was coming because of the very last exchange, which had gained hundreds of comments, all angrily aimed at me.

After our twins were born, I sought to find a group of moms I could hang out with without leaving the comfort of my living room. Enter my trusty laptop. The emergence of Facebook groups at the time had taken social media by storm. As a result, people could find like-minded peers online, exchange ideas or advice, and create lifelong friendships without ever meeting in person.

The group I found contained over 300 moms, and it promised to be a place where the members understood what I was going through. Our exchanges started innocently enough. Fellow moms would create posts like the best way to calm a fussy baby, and other moms would weigh in. For the first few posts, I was glad to be in a place where I could provide my expertise (having four children) and still learn something that could benefit me.

I can’t pinpoint when things took a turn. But it may have happened when a worried mother posted that her baby wasn’t eating well and hadn’t been for several days.

Immediately, fellow moms in the comment section started to sound off. However, I was startled by what I read. Some suggested small amounts of castor oil, while others suggested massaging alcohol on the baby’s gums. There was even one recommendation that involved a warming lamp, oils, and steam.

“Call the pediatrician,” I posted underneath the mom’s question.

Their ridicule of me, as well as the rejection of my suggestion, was swift. Confused, I shrugged it off, assuming “mom stress” and didn’t give it much thought.

A few days later, another mom posted that her baby was on day three of a high fever and begged the group to tell her what to do. Dozens of moms suggested everything from cool compresses to mixing combinations of raw vegetables and vitamin oils.

“Give them Tylenol and call the pediatrician,” I responded. Clearly, her method wasn’t working.

The backlash to my comment was immediate. Through those comments, I discovered that this was no ordinary “mom group.” Unfortunately, in my haste to join, I missed the line in the description containing the words “anti-medicine” and conspiracy theories about physicians.

My effort to argue for the benefits of traditional medicine and necessary visits to the pediatrician caused an uproar. The following day, I was blocked from the group.

Being kicked out of a mom group is one of my favorite stories to recount. Yet when I finished telling the story to an acquaintance last year, she immediately took the side of the group.

“Just because you don’t believe in natural methods doesn’t mean you should demand others shouldn’t either.”

Her statement made me pause. Is that how it came across? Although that was never my intention, I could see how people would believe that’s how I felt.

When our oldest daughter, whom we lovingly refer to as Ladybug, was diagnosed with hereditary angioedema (HAE) in 2021, we were already familiar with “traditional medicine” and doctors.

Aside from her severe allergies that require a monthly Xolair (omalizumab) shot and her inhaled steroid that helps control her asthma, we became familiar with Berinert infusions for emergencies, Heagarda shots for preventive measures, and ultimately Takhzyro (lanadelumab). Add to that the four to five different specialists that help manage Ladybug’s care, and our family would seem like the grand marshals of the traditional medicine parade.

However, Ladybug can’t take ibuprofen because it exacerbates her flares, so we use turmeric and ginger tea to help with inflammation or cramps unrelated to her HAE. Because she’s allergic to a standard antibiotic, we find ways to boost her vitamin C and overall immune health so her body can fight off those common childhood bugs.

My intent in the mom group wasn’t to make the moms feel bad about using natural methods or try to strong-arm them into what is considered “traditional”; I was trying to introduce the “and.”

We should always consider other options when “our” way doesn’t seem to work. It’s essential to find medical professionals we trust to help us choose the suitable methods necessary to help us care for our loved ones. Because “adding” simply means we’re gaining more techniques and support to help them feel better. And helping our loved ones feel better should be the only thing that matters.

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.