Things are not the same: A critical look at disability and retirement

Years ago, I heard someone in the chronic illness community say they were “medically retired.” It was before I had fully accepted the idea of being disabled, and I thought it was the greatest euphemism I’d ever heard. Until recently, that’s how I described myself, too. But now that my husband, Michael, has actually retired, the stark contrast is painfully clear.

Retiring from his career of more than 26 years with New York City Transit is something we’ve both been looking forward to. We’ve been dreaming about it for years, and countdowns to his last day ran on both of our phones. It couldn’t come soon enough, and submitting his retirement papers was cause for celebration.

When I left my job, it wasn’t by choice. Doctors hadn’t figured out my diagnosis yet, but severe pain and fatigue made it impossible to do my job. I tried to find another position that I might be able to endure — something that didn’t require any physical exertion, had a flexible schedule, allowed me to work from home, and paid more sick time than working hours; in other words, something that didn’t exist. Submitting my disability papers felt more like devastation.

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Though Michael said he didn’t want a party, everyone around him wanted to honor him and this major milestone. They had a nice little send-off on his last day at work, and a much bigger one later that evening, with generations of transit workers sharing stories about how much they loved training, working with, and learning from him. Our moms — they’ve become best friends and do everything together now, which is adorable — took us out for lunch and put together a basket filled with retirement-themed novelty gifts. His friends have talked about two more get-togethers this week. And next month, we’ll be celebrating him again on a cruise with some of his friends.

When I stopped working, my co-workers just faded away. I stayed in touch with a few of my volunteers through social media, but there was certainly nothing to celebrate. All I had was a pity party, and even there, I was alone.

As people hear of my husband’s retirement, they offer congratulations and ask what he plans to do next. When they hear of my disability, they offer condolences and try — usually unsuccessfully — to hide their own discomfort.

At one of the retirement parties, someone asked when I would be able to retire so my husband and I could enjoy the time together. I told them that I’m on Social Security disability. There was an awkward silence, and I could almost hear a movie-style record scratch to highlight the moment. To ease the tension, I added, “Well, I’m a writer, so I can do that from anywhere.” That seemed to be a more acceptable answer, and I was able to move on.

Charting a new course for the future

The biggest difference, though, is one that will be ongoing that we’ll have to continually reconcile as we move forward in this new stage of our life together. Vacations have always been a big deal for us. It’s not just that we love to travel and experience new sights, sounds, and tastes; it’s also been the best way for us to have quality time together.

Some years, it was the only way. When I was still working, we often had alternate schedules, with rarely a day off together. When I couldn’t work anymore, he began working as much overtime as possible to offset the lost income — usually six days a week, often 12-hour days or longer — so I still didn’t get to see him much.

Now, he’s basically on a permanent vacation and looking to make the most of it by going to shows and sporting events, planning little (and not so little) trips, and checking items off our bucket list. I am so excited for him and for us, and overjoyed with the pure bliss that I see on his face.

That said, because I live with sarcoidosis, I don’t have quite the same freedom; I can’t just go anywhere, anytime. I have to plan around my weekly infusions and frequent medical appointments. I have to plan for the rest I know I’ll need before and after most activities. I have to expect the unexpected and prepare for a flare (an increase in symptoms or disease activity) that can happen any day, any time.

That means I can’t take as many trips, attend as many games, or even dine at as many restaurants as my husband would like. I’ve got to — rather, we’ve got to — navigate a new course together, one that balances our wants with my needs, our availability with my disability, and our dreams with my reality. But I am confident we will do that, together.

So now, we celebrate. But first, a nap.

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