My Secret Journey

In spring 1989, following diagnosis, I returned to work at a private psychiatric hospital. I’d had a few months of on-again, off-again periods of sick leave due to exacerbation of my MS.  Then a letter appeared in my mail box inviting me to a meeting but offering no details. I’d arrived to find two other employees waiting there. We all expressed our confusion and tried, but couldn’t find, a common denominator between us since we worked in different departments.

The recently hired administrator entered the room and greeted us. This man had been specifically brought in to make the hard changes necessary for the hospital to survive. He stated that we were in dire financial straits and he was looking at creative ways to save the situation. He’d go on to offer us this wonderful opportunity. At least, that’s what he called it.

With rumors about cuts and layoffs that had been going around, we braced ourselves. I was sure I was either out of a job or would have a reduced schedule. Instead, we found what our unknown common denominator was. We each had a chronic illness which raised the spector of the much dreaded pre-existing condition.

He spoke of the higher premiums the group insurance plan had to endure because of our medical conditions. We were being offered the wonderful opportunity, his words again, to leave the company health plan and join the Wisconsin high risk insurance program. At one point he almost pleaded with us to understand how this would help the hospital survive. That was probably the most sophisticated guilt trip I’ve ever endured.

I wasn’t staying at the hospital much longer since I had only one more semester of graduate school to finish. I’d finally accepted that school and work were too much for me and I’d made arrangements for a small loan. I’d already received payment for tuition and books from DVR. So, I quit that job.

I’d given lots of thought to that decision and had worried since I’d be without health insurance for the five months until I graduated and found a new job. I reasoned that since I was a student I could use Student Health Services for minor needs. I had a disease where the only treatment was rest; the worst thing would be not being able to finish my class work. I knew I was taking a big chance.

Meantime, I’d done some research on health care coverage regarding pre-existing conditions; this gave me a new hurdle to jump in getting coverage from most employer programs. One important thing I’d learned is that larger organizations tended to ask fewer questions. Still, I was actually, by law, required to disclose and dreaded submitting to the new employee physical.

But there was also the complexity of deciding whether or not to disclose at the time of the job interview. There were several camps, some saying its best to be honest and others saying no, unless it was obvious there would be difficulty in doing the job. Quite a conundrum.  I rationalized that I was feeling really good and I was having no visible symptoms. I decided to risk it by not disclosing.

Thus began my secret journey. After graduating, I applied for a job at a large foundation and didn’t disclose. All that worry for nothing because they never directly asked any health questions. But once hired, I read carefully their requirements for covering pre-existing conditions. The manual said I needed to be employed for six months without any claims for my condition. Then I was covered. Believe me, I held my breath and watched the calendar.

I began my new job in January, 1990 and then in June 1990, the Americans With Disabilities Act was passed. After the initial relief, rather than simplifying, disclosure became an even more complex issue for me. I’d reached a place of almost complete remission and no one would have guessed there was anything going on with me. It was a relief to know I had options and now, some protection. I knew that I only had to disclose if I was asking for accommodations.

Should I or shouldn’t I was a sobering question. I felt dishonest. How to be fair to my employer and also to myself. I always had to be especially careful not to overdo or make promises I couldn’t keep. More than anything, I wanted to work, to get my life back, to be normal again.

I went on to work in some highly competitive environments and had decided I didn’t want to appear unable to keep up. I didn’t want to be seen as “disabled.” So I kept my health history a secret. Though I never disclosed to an employer, I did confide to trusted colleagues several times when it was needed, receiving support and understanding.

And there were many times throughout my work history when I had symptoms pop up. I’d take a sick day. Or, I’d do just the minimum at work and then go home to rest. That’s the great thing about having a flexible job with benefits; what do people do who don’t have that luxury. And it is a luxury.

Following diagnosis, I worked for twenty five more years in my profession, changing jobs seven times, never asking for accommodations. I retired in 2013 and look back, happy with my original decision to not disclose. I often wonder how my life would have turned out if I’d accepted the disability label instead of keeping my secret.

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