Can You Keep a Secret?
Medications come with warning labels. Maybe rare diseases should, too. Warning: Atypical hemolytic uremic syndrome may cause secrecy in patients and caregivers.
aHUS is a rare and life-threatening condition, and there are many reasons not to share a diagnosis or prognosis. Within the family, patients may want to shield loved ones from the severity of their illness. But in the professional world, rare disease patients — whether they are employees, bosses, or self-employed — often feel the need to hide their condition, fearing they may be perceived as fragile or terminal, resulting in lost opportunities.
Living with a rare disease while trying to make a living can be difficult.
Personal and professional survival
Three days into the onset of my husband’s aHUS, he was transferred from our local healthcare facility to a regional teaching hospital in the state capital, two hours away. Dozens of our priest and deacon clients serve in this big city and regularly roam the halls of this very institution, ministering to the sick. I was bound to bump into one of them who would ask me why I was there.
Partners in life and work, Ronald and I were awaiting imminent approval of our largest pending contract, which had been delayed at the diocesan review board for over a year. Thus, rather than bring comfort, I feared a chance meeting could jeopardize the work that we needed to keep our staff and our health insurance premiums paid during his convalescence.
If word got out, the review board might lose confidence in our ability to complete the project; worse, the pastor would be justifiably annoyed to hear the news from a colleague and might lose faith in us.
True confessions
I called our client. “Father, I have something important to tell you but you can’t tell anyone else.”
“OK. Wait, is this about our restoration project? I might have to talk to someone about it.”
“Yes. It is also my confession, so you are required to keep it secret.”
“OK …”
Then I told him I was just blocks from his church, sitting vigil in the critical care ward. I assured him that Ronald’s design work was done. Once the approval came, our foreman, subcontractors, and I would get to work, doing our jobs to execute the completed designs. And we could really use the work now, while our designer recovered from his illness.
“Oh, we can deal with that,” the pastor said. Then he did his job. “Can I come visit y’all in the hospital tomorrow?”
Long-term commitments
A couple of years into living with aHUS, we received an inquiry for a large stained glass commission in another state that would take at least two years to execute. My husband/designer/patient and I discussed the dilemma. Was he up to it? What is our moral obligation to a potential client versus our responsibility to our staff? What is full disclosure and what is normal risk?
We decided to keep all options open and met with the church committee. They were impressed not only with the quality of our portfolio but also its volume, prompting the pastor to ask my husband’s age.
Surprised at the large number, he asked, only half-jokingly, “Are you healthy?”
“I am today,” Ronald replied, adding, “Of course, you never know what the next day will bring.”
It was an honest answer, as true the day he spoke it as it would have been the day before he unexpectedly fell ill. We had taken on many large projects over the years that were dependent on the talent of this one man. But now we structured the contract a bit differently, to create all the designs up front and execute the works consecutively rather than concurrently. This allowed us to have a master plan and some quality control in place for the full project, should we ever need to bring in help to finish it.
LinkedIn and coming out
Writing this column allows me to earn some income because of the illness we live with instead of in spite of it, and for that I am grateful. But when my new employer requested I note this position on my LinkedIn profile, I hesitated. Until now, I have kept our medical and professional lives separate, online as well as in real life.
I considered whether I need to keep this secret forever. We had completed the restoration project on time and on budget. And we installed the last of those 22 stained-glass windows in North Carolina this spring. Having met our obligations for five years since diagnosis (while prudently declining a few), I decided this is as good a time as any to come out. So, I am making a healthy choice to kick the secrecy habit about this disease.
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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.
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