Take This Job and Love It

This is my penultimate column. That sounds very important and distinguished, doesn’t it? In fact, it simply means this is the next to last column I will write for aHUS News.

I started last May with the thought that I could commit to it for a year, then reassess. By January, the pull of other professional obligations and personal concerns confirmed it was time for me to wind this down. So I gave my notice, effective at the end of April, and am reflecting now on a year’s worth of documenting life as a caregiver for my husband, a rare disease patient.

A dream job

I found aHUS News during one of my late-night expeditions across the internet. I was always looking for updates and new perspectives on this condition and its treatment. This site was more factual and professional than the empathetic patient support groups and blogs, but not as technical and indecipherable as the medical journal articles. Perfect. I bookmarked it and made a point to check back often.

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Then, one night, while my husband slept, I was perusing the pages and happened upon a notice of an opening for a columnist. The application required that the candidate be a patient or caregiver; the position was freelance and remote. I was stunned. I could do that! From home! While he slept — night or day! It seemed too good to be true. The next morning, I thought it must have been a dream.

Remote and accessible

Bionews, the publisher of this site, has been employing remote workers in a gig economy since before COVID-19 made that commonplace. The company has a policy to try to hire from within the rare disease community it serves. This has provided many opportunities for the differently abled to work from home and choose their own shift. Thus, many writers, editors, and even corporate managers were readers first.

But freedom comes with responsibility. The ability to work from home means columnists are paid to produce, not to chitchat, network, or just clock in. We pick the topics, submit drafts that meet a minimum and maximum word count, write our own headlines, choose links, and meet deadlines. Then our work is subjected to review by editors, because we are tasked with writing with purpose, for an audience, not just making journal entries or blogging for our own amusement.

On-the-job training

I had written articles for specialized publications before, but they were from my professional point of view, not my personal one. I was amazed that anyone might be interested in our private experiences as patient and caregiver.

Writing for this niche audience made me imagine who my readers might be and what I could offer them. Sometimes I reached out to the newly diagnosed, giving them proof of the possibility of progress. Other times I used my platform to question a doctor’s treatment or praise a hospital worker’s dedication. Many columns were just slice-of-life pieces that chronicled our adjustment to new limitations and perspectives.

On the practical side of producing my work, I had to come up to speed on some technical skills and programs. My husband and I work with our hands, in the medieval arts, so I was a bit of a Luddite when it came to high tech. But the company provided training, also remote, online, and at my own pace. So now, I can add WordPress and Slack program proficiency to a skill set that previously focused on stained glass and mosaics.

Letter of recommendation

As I prepare to leave this column behind, I encourage readers of this site to consider taking it on. Whether you have aHUS or care for someone with the disease, you have a unique and valuable perspective. And writing about it is empowering. It’s an opportunity to work because of a connection to this syndrome, not in spite of it. It’s a chance to transform experiences and challenges into subject matter and examples. Go on, check out the job description on the Careers page and apply. Tell them I sent you.

I remember the day I heard, “Your husband has atypical hemolytic uremic syndrome.” That sounds very scary and ominous, doesn’t it? In fact, it’s simply the latest complication we’ve integrated into our lives. Six years of living with this disease, including a year of writing about it, have taught me a lot. I hope I’ve been able to pass some of that along, and I look forward to learning more from a future columnist’s perspective.

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.