The road less traveled highlights the importance of being informed

Navigating chronic illness without a road map is a frustrating experience

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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Had I known Yelp existed back then, the outing would have received zero out of five stars.

After hearing great things about a nature walk from one of our outdoorsy friends, my husband and I drove to meet her about an hour outside Columbus, Ohio. Because I grew up in the Tennessee Valley, where most nature walks consisted of slight inclines and well-worn paths, I slipped on some sandals, a sleeveless shirt, and a stylish maxi skirt.

But the treks I was accustomed to were nothing like how this particular afternoon played out.

Our friend hadn’t invited us for a simple walk — it was a difficult hike to a waterfall on one of the most grueling paths in the state.

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The cute outfit I was wearing didn’t stand a chance against the large boulders we climbed over, the cliff ledges we shimmied across, or the stones we hopped on to cross several creeks. Several times along the way, I had to stop to rest (unaware that I actually had asthma) only to realize that we still had a long way to go.

Five miles later, we finally reached our destination. Unfortunately, I was weary, dusty, and out of breath.

We’d received recommendations from people who’d hiked the trail many times and probably thought we knew what to expect, but our lack of information actually made the experience worse.

Why we should share our experiences

Before our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema, I felt like we were on that hike.

The journey to her diagnosis was arduous and included unexpected twists and turns. But instead of cliffs and rocks, we were dealing with unexplained facial swelling, misdiagnosed stomachaches, and her generally “not feeling well” without knowing why.

At first, we weren’t prepared. But as we began to talk to knowledgeable doctors, nurses, and a community of people like those at the Hereditary Angioedema Association, they slowly helped us piece everything together, allowing us to map out treatments and discover how Ladybug could live more comfortably.

Many years after that hike, my husband and I revisited the site with friends. But before we left, we told them how to dress and what to expect. The hike was still challenging, but because they knew what was coming, they could pace themselves, relax, and feel better because we could share the same journey.

As a caregiver for someone with a chronic illness, sometimes our jobs are greater than only taking care of the people we love. We should share our experiences, be honest about our losses, and communicate our triumphs. Does it make the journey easier? Not necessarily, but knowing what we’re facing, with someone who understands, makes the “hike” we’re confronting better overall.

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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