Mourning What Could Have Been

Last updated: June 2020

It seems that no matter how long I have rheumatoid arthritis, the grieving process never ends.

Fifteen years ago, at the age of 22, I was given the news that I had an incurable, degenerative, autoimmune condition. It took some time to fully digest that the pain, swelling, and intense fatigue I’d been experiencing were not caused by an illness that my immune system would eventually fight off.

Rather, I discovered it was my immune system itself that was doing this to my body. I was devastated in realizing that I would have to cope with these issues for the rest of my life.

Moments of grief years after an RA diagnosis

As time has gone on, I have assimilated that knowledge into my daily reality, and it no longer causes the ongoing depression I experienced the first few months after my diagnosis. Rather, it causes intermittent bursts of momentary depression.

Emotions vary with how I feel physically

Since the disease activity fluctuates, my emotions often vary in response to how I’m feeling physically. Often the overwhelming emotion I feel while fatigued and in pain is frustration, as RA can put strict limits on my activity and productivity levels. Occasionally however, the feeling I experience, even after all these years, is grief.

Grieving what could have been

I am often struck with the “might-have-been blues” when I have to cancel plans due to a flare. Our family recently went out of town for a long weekend, and Friday evening I was hit with severe hip pain. I spent the next day in bed in my hotel room, rather than going to the zoo with my husband and kids.

Missing out on special events or gatherings over the years

Over the years I’ve missed weddings, reunions, and parties I’d looked forward to due to flares of RA. Each time I have to miss an opportunity to be with loved ones on a special day, I feel a sense of loss of that healthy adult I always assumed I would be.

Smaller moments that lead to feelings of grief

While missing out on bigger events usually leads to some feelings of grief, sometimes it’s surprisingly small things that cause unexpected spurts of mourning.

For instance, the other day I was at the grocery store with my young children, and they wanted to ride in the shopping cart shaped like a racecar. On a good day, I can lift them into a shopping cart. But that day I was far too achy to attempt to hoist up their three- and five-year-old bodies.

Mourning within the context of motherhood

These micro-moments take place all the time, and I usually let them pass with acceptance, but sometimes they sting. While not as big a deal as missing a day at the zoo with them, that day I mourned the loss of the mom who would have been able to grant such a simple request.

Other days, I wish I wasn’t sitting on the sidelines as my husband runs around with the kids, even while feeling grateful that they have a dad who runs around with them. Although I’ve had RA far longer than I’ve had children, I still sometimes think about the things I could do with my kids if I didn’t have the physical limitations that I have with RA.

Acceptance and grief

Most of the time I accept who I am: a multi-faceted person contending with rheumatoid arthritis. Yet, every once in a while, I’m visited by that ghost of might-have-been, the specter of the person I would like to be, a 37-year-old with a healthy immune system who is rarely confined by pain and fatigue.

I recognize that this can be counter-productive

I recognize thinking about that imaginary person is counter-productive, and I try to exorcise that phantom from my thoughts. Yet, from time to time, I am revisited by this spirit of grief. It can materialize unexpectedly, stirring up emotions out of hibernation, and leave me longing for that healthy version of me that I didn’t get the chance to become.

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