Good Grief

What role does grief play in living with a rare disease?

I’ve been thinking a lot about grief lately. The word often conjures images of a widow mourning for her partner, but grief has a much broader definition. Grief is part of processing the loss of something important, and that could be a career, your health, a hometown you left behind, or any number of things.

A psychologist serving as my business coach introduced this concept to me a couple of years ago. My wife and I had sold the marketing and communications company we started and ran for 24 years, and I was working through some career shifts. “You haven’t given yourself space to grieve,” she said during one of our coaching sessions.

“Grieve?” I replied, surprised at her statement. “What do I have to grieve? This is exactly what I wanted, to grow the business and find a strategic acquirer who would take it to the next level while taking care of our employees and clients.”

She went on to explain that something very close to my heart was now gone, no longer part of my life, and that I needed to acknowledge the impact. The business had been at the core of our family for almost a quarter century, and because it was ours all the wins and losses, all the highs and lows, were personal.

She was right. I realized that, despite my satisfaction with the deal, part of me ached at the hole it left inside me. Something we built from scratch was no longer ours, and I had to process this loss.

I thought of that recently when I reached a turning point in my journey with myasthenia gravis. There have been times I believed the disease was totally under control and that my life could go back to what it was — multiple home and work projects, travel, networking, growing new business, enjoying a variety of leisure activities, and more. In a season of particular challenge with the disease, I forced myself to admit the truth: that will never be my life again. I have to pace myself, adjust to a schedule that is less packed, take on fewer projects, and generally slow down.

That realization has been years in the making.

Immediately after this became clear to me and I acknowledged it out loud, the grief set in. Some of the things now lost to me were important parts of my identity. Releasing them means redefining myself to some degree.

I’ll be exploring the topic of grief as a part of the rare disease experience more fully, and I’d love to hear how others are coping. If you’ve had similar encounters with grief in your rare disease journey, please share them in the comments. I may reach out for more information as I delve further into the subject.

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