Do We Ever Stop Counting?

I have been sick for twenty-seven years, today.

My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented.

Marking the day, here with you or on my own, feels important. October 6th is the day my life changed forever. It is as significant to me as the day I met my husband, as the day my mother died. This day was a turning point in my life.

So many others have their own sickaversaries, and my heart is with them too. Friends with ME who have been sick longer than 27 years. Those with Long COVID who have passed their first sickaversary, or who see it coming at them fast. We feel trapped in amber, always looking for a way out.

The anniversary effect or anniversary reaction is a recognized aspect of trauma. Dates associated with losing a loved one, experiencing a natural disaster, or any other traumatic event can have an impact on us even many years later. Gentle self-care and support from others can help us get through it. There’s no official duration of the anniversary effect, though. It might hit us every year forever, or just a couple years, or sporadically over time. Grief is a wave, and sometimes we just have to surf it.

Yet, it is a hard and heavy thing, carrying a day like this around. When I woke up yesterday, I found myself wondering if I could put it down. Could I stop counting?

When does the Day I Got Sick become just another day? Is there a point where my Sick Life becomes just . . . my life?

Maybe that point exists for me, but it is not today. I was twenty-six years old on the day I got sick, twenty-seven years ago. I have now spent more than half my life with ME. With each passing year, the healthy portion of my life will shrink further and further away.

Maybe there is a day when I will stop counting. But not today. Not today.

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15 Responses to Do We Ever Stop Counting?

  1. Rivka says:

    I totally relate. This November will be 32 years for me. I have not stopped counting either.

    • Jennie Spotila says:

      Should we? Do we have a choice? I would love to set down this burden but I don’t see how it’s possible.

  2. Monica Arranz Arroyo says:

    Yo tengo 27 años con ME. Y no he dejado de contar para mí y los míos. Para las Administraciones, invisible, multimedicada, exausta.😘

    • Jennie Spotila says:

      Perdona mi dependencia del traductor de Google. Tienes la misma edad que mi enfermedad. Angustioso.

  3. seesir says:

    Jennie….of course I’ve stopped counting! In fact today is the first time I’ve ever counted the years …just over 77 going on 78!!

  4. Cecelia Blair says:

    25-26 years for me. I had what seems like a gradual onset of disabling symptoms. I had had infections pretty often that year and don’t know if there was one particular one which started it. Or, if I have had ME/CFS for many more years than that. Reason I wonder is I accrued the symptoms one after the other from earlier in life, only it never occurred to me that these weren’t either temporary or else specific problems which I had, for some reason. (Was raised not to complain and also not to go to the doctor for viral infections and many other things.)

  5. The week of November 5, 1989, I was presenting a paper at the annual meeting of the Div. of Plasma Physics of the American Physical Society in Anaheim, California. I was working for the Princeton U. Plasma Physics Lab, and this was the big annual meeting where I saw everyone, including other physicists and nuclear engineers I went to school with at U. Wisconsin-Madison. Colleagues, friends.

    By Thursday of that week, I had a raging fever, and was sick – felt like a virus. I don’t know why my doctor had antibiotics waiting for me when I got home, but she did. I left at the end of the week’s meeting, got home, took the medicine – and have never been well again.

    How can you NOT remember when your life effectively ENDED?

  6. Laurel says:

    I hear you. 25 years for me. I don’t much think about it any more, but the older I get, the more I miss what I had planned for my life.

  7. Barbara McMullen says:

    I got sick in this month as well. Thirty-two years.

  8. Carollynn says:

    October, 2003, I began to realize that I had mono again. I’d had it acutely in 1998, kept working at a new and exciting job but stayed half sick until a month off in 2000. I seemed to return to full health, for three years. Earlier times in my life–Hong Kong flu (I’m sorry for that terrible name) at age nee in 1968, slipping into “laryngitis” easily starting in high school, a mono-like flu in college in 1985 that student health could never figure out, and then that mono. Was I gradual onset or sudden? Surely the fall of 2003 felt sudden.

    “Only” eighteen years ago. As Alicia noted, how could you/we not count?

    And yet it’s also important to ask “when does my sick life become just MY life”? I think it’s the surfing metaphor again, riding the “now” without having to drag along the “used to be.” I’m certain this is a life practice, for me anyway. I get it wrong often but there’s real freedom in the times that “now” is enough.

  9. CatLa says:

    I too have passed that strange dividing line—the one when I have been in the Kingdom of the Sick for more than half my life. I got ill when I was 29; today I am a few days shy of 63. I long ago gave up hoping I would get better. What I hope for now is to get better at living the life I have, not the one I lost, or the one I wish I had. There was no one moment when I made that choice, but I know I have made it.

    I also know I am lucky in many, many ways, even if I have to remind myself that that is indeed the case from time to time. The less often I have to do that, the better I am getting at living this life.

    You never stop counting. You just learn not to run the numbers so often.

    • Jennie Spotila says:

      “You never stop counting. You just learn not to run the numbers so often.”

      That’s beautiful. I love this.

    • Barbara McMullen says:

      I got sick at 29 as well, in October. Now I am 61 and, like you, have been sick longer than I was well. I feel the same about trying to live as well as I can with how I am.

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