No One Is Immune From Everyday Challenges

Celebrities seem to have it all. Their lives look so easy and enviable. We watch them sing, dance, act, and then share a laugh with late-night talk-show hosts. Their albums, shows, and movies make millions. They wear designer clothes and their hair is perfect. We often assume these beautiful people have wonderful lives where daily difficulties and lifelong struggles can’t reach them.

Thus, many of us are surprised when celebrities melt down publicly. Sure, we should know that tabloids exist only because movie stars get divorced and rock stars go bankrupt. But recently, we have learned that a high-functioning, top-earning former Las Vegas performer has been living under conservatorship for years. And a beautiful actress, whose wedding to a genuine prince we witnessed on live television, was profoundly depressed.

How can this be? Why are these extraordinary lives cluttered with the ordinary debris of lost love, overdrawn accounts, family squabbles, and mental health issues? How could they not be immune from such commonplace concerns?

Our parallel universe

Living with aHUS has made me aware of a parallel expectation. Reaching the precipice of losing it all makes the leftovers of life all the more precious and enjoyable. A rare disease diagnosis is as uncommon an occurrence as achieving fame — and as life-altering.

Patients, and those who love them, just want to rise, shine, and have a nice day and an early bedtime. We hope to have enough energy to earn enough money to maintain a decent lifestyle. Comfortable clothes and bad hair days are fine with us. Focused on our quiet life of lowered expectations, we can easily forget about the minor details and major challenges that inevitably intrude on everyone’s plans.

I find myself repeatedly bewildered when predictable or inevitable medical events appear in our carefully crafted quotidian regimen. Of course we make regular dentist appointments, know that the whole family is aging with each birthday card we send, and try to spend some time outside. But suddenly, my husband needed dental surgery, my octogenarian mother was hospitalized after a fall, and the pollen count had me in tears.

Why is this happening? How is the simple daily routine we have built around this atypical illness abruptly suspended by typical medical situations such as root canals and hip fractures? Shouldn’t people coping with a rare disease be excused from seasonal allergies?

A fearless approach

No one can avoid the trials and tribulations of the human condition. The superstars rely on their agents, lawyers, publicists, and personal assistants to cushion the blows. My husband and I have our doctors, families, friends, and each other to lean on.

We also have perspective, having been inoculated against fear. When the unexpected and inconvenient comes along, our motto is, “You can’t scare us. We live with a rare disease.” We have been to the critical care unit and back. We can handle whatever today brings.

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Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.