Living With an Illness: A New Kind of Normal

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It’s easy to use the word normal like it’s, well, normal — something typical and expected. But living with an illness is not easy, nor is it normal for many people.

Normal can be a subjective term. What’s normal to me might not be normal to someone else.

One thing everyone should agree on, however, is that being chronically ill is not normal. Being too weak to speak is not normal. Being too debilitated to walk is not normal. Being too sick to eat is not normal. Being in chronic pain is not normal.

The worst part is when these things are so constant they become a new kind of normal. They replace the feeling that many healthy people expect to feel tomorrow, the next day, and maybe even for the rest of their lives.

When chronic illness becomes a new kind of normal, it also becomes a cruel existence, one in which pain is a constant torture and exhaustion is as frequent as breathing. This is living with an illness at its worst. It makes symptoms feel as regular as the normal feeling that many healthy, trauma-free people have known their entire lives and, in their perceived invulnerability, have come to expect.

I’ve been sick long enough that I sometimes forget how it feels to be healthy, how it feels to not live with pain everyday, how it feels to not get exhausted brushing my teeth, and what it’s like to speak as much as I want, as loud as I want, whenever the hell I want.

Being deprived of basic human functions like this has made it difficult for me to remember what normal was once like — how things used to be, how they’re supposed to be.

But I haven’t forgotten entirely. My memories of how things used to be may not be readily on-demand in my mind — I usually have to dig for them — but they are still there. If I really focus, I can remember what it was like to give a speech in front of a crowded room or talk to a friend for an hour on the phone. I can remember what it felt like to walk around the block. I can even remember how the smooth, cold metal of a barbell felt when I lifted weights in the gym. I can remember lots of normal things — the way my shoes kicked up tiny rocks as I hiked up a mountain, the way the grass smelled when I sprinted across a lawn, the coarse laces under my fingers as I gripped a baseball.

I miss these things. And that’s how I know I haven’t forgotten what normal feels like. Missing these things is the ultimate reminder of what normal used to be like for me; it used to be feeling healthy.

Compared to how I feel now, that normal feeling would be the greatest thing everan extraordinary but simple state of being that, in my current condition, is both a humbling reminder and something to strive for.

There’s no denying that living with chronic illness is a shitty existence, but it’s still an existence, one that can always improve, one that offers hope and the possibility of a better life. That’s what keeps me going.

For now, I have to deal with a new kind of normal, one that is, in many ways, the exact opposite of how I felt when I was healthy. But, no matter how far I drift from that blissfully healthy feeling, I’ll never stop wanting to feel normal again.


1. Thanks for reading!

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13 thoughts on “Living With an Illness: A New Kind of Normal”

  1. My new normal is accepting my life as it is, while maintaining hope for a better life. It’s a balancing act. I do hope that Ron Davis, and other researchers, will be able to deliver us from the hell that is ME/CFS.

  2. La niña De la katana

    New kind of normality ..
    I only allow it, without judgments or labels or apply any resistance to the situation or pain.
    Sounds weird, but I learn from the new kind of normality…
    When you allow things to be as they are, it is possible to find peace in the storm!
    Good mood, hope, light and love!
    Big hug!

  3. Great writing as always. Described us very well. Having a particularly not normal day today. It is hard to remember after almost 14 years what normal felt like but I keep trying to remember. 🦋

  4. Tamara Reeme Glavor

    Just started watching the new show called “Chasing the Cure”. Hope you consider submitting your case there. You just never know…
    Keep hanging in there🙏

  5. I changed my normal, moved cross-country, joined a retirement community – and still most people are in far better shape than I am.

    My new normal is still better than I am. Just less worse than before.

    After a whole year, I barely starting to write reliably again. I hope the investment is worth it.

    Don’t get too used to the new normal. ‘Rage, rage against the dying of the light.’ It’s the only rational response.

      1. Davis, California. We still haven’t recovered from the move, partly because this is such a wonderful community of impressive-resume people – academics, lawyers, physicians and nurses, people who did things like run NASA Goddard. It takes a long time to even start getting to know a fraction of 350 people and 200 staff.

        The hardest part has been replacing our structure from NJ: doctors and other professionals. We haven’t even gotten around to getting drivers’ licenses – sold our cars before moving.

        I am ever so slightly better for not being responsible for a suburban house – and ten times further behind on the social side (we basically had NO social life before).

  6. Pingback: This Week’s M.E. News – Week 35, 2019

  7. Hugs, Jamison. You are so brave.

    I remember what it felt like to dance in pointe shoes and how the feeling of sore feet was the best sore in the world. I remember the feeling of riding Mom’s horse bareback, galloping, flying, across the field. I can smell “sweaty horse” now. 🙂

    I loved your descriptions, too.

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