How To Accept Chronic Illness or Disability Gracefully?

Maybe it happens all of a sudden: you're crossing the street in a clearly marked crosswalk and a car runs a red light and hits you. And your body is never the same again.

Or maybe it's the onset of a peculiar minor symptom, followed by more strange little symptoms, all of which get more alarming and eventually turn out to have a common, unfixable cause.

Possibly it's just the inevitable, but still disagreeable, result of getting older. Organs and other body parts begin to fail in ways that are not reversible.

But the bottom line is: you are no longer "healthy" in the way you used to be, and you probably never will be again, and the best you can do is try to accept this and move forward.

But how?

Oh wait... maybe you thought I was proposing an answer? No, I was asking YOU, because I seem to really suck at this whole acceptance thing. 

Quick Recap: What The Hell Am I Complaining About Now?

It's Hypoparathyroidism! And no need to bother learning how to say it or spell it--it's really rare so you'll have no use for your newfound knowledge.

My handful of regular readers may recall that after having surgery in Spain to deal with thyroid cancer, my doctor didn't just remove my thyroid, he somehow managed to render all my parathyroid glands completely nonfunctional. Parathyroids are a different animal than a thyroid, they're just tiny little things the size of a grain of rice. When they don't work, the body can't regulate calcium, which, as it turns out, screws up all kinds of things other than just your bone health. Calcium is crucial for nerve and muscle functioning, and it's probably worth noting that a heart is just a big ol' complicated muscle, and it needs to contract correctly or Bad Things can happen.

Almost a year later, I still have no parathyroid function and the condition appears to be permanent. In the short term, it means muscle twitching and other weird neuromuscular sensations, nasty cramps, and fear of seizures or heart problems if levels get too low, or the queasy knowledge that kidneys and other organs are suffering damage if they get too high. It takes me about a million pills a day to try to reach equilibrium.

The most annoying part for me is that it's been preventing me from doing cardio. When I give it a go, even in the gentlest way possibly, my calves revolt: first they start twitching, then aching, and then they wake me out of sound sleep at night with those horrible "oh fuck fuck fuck fuck" sort of cramps. It's creepy, too, because it implies my body is likely experiencing other less visible, signs of distress that could mean serious trouble.

I do realize that many 65 year-olds have given up on cardio already, for a variety of reasons, but I really don't want to be one of them. Yet every failed attempt to return to my normal routines leaves me feeling bitter and depressed, sulking like a toddler denied a lollipop.

Recently I had a brief respite from symptoms when my Spanish endocrinologist upped my calcitriol to a higher dose than my American endocrinologist had me on, and I was thrilled to be able to return to working out with my vr holofit app!

 

Until my lab results came back and I discovered I was dangerously high in both blood and urine calcium, and already starting to lose kidney function. (Note to self: having two different endocrinologists in two countries advising totally opposite approaches is not optimal).

Can I Get Some Advice, Chatty? 

There are of course much better resources for confronting discouragement and angst than Chatgpt. I should probably do some serious soul-searching with the help of my favorite science-based spiritual gurus, Rick Hanson and Shinzen Young.

But what the hell, my faithful research assistant Chatty McClanker is right here by my side!

So what would you do, Chatty, if you were feeling defeated by chronic illness?

 

 

So here is some of the handy advice she came up with, paraphrased. As much as she would prefer I let her write the entire damn blog post herself. Down, girl.

Give Up the Pressure to Fix Things

She points out that trying to return to a previous version of yourself can create more distress than the illness itself. "Learning to live with limits, rather than constantly fighting them, is often the real work."

Instead of asking why you can’t do something anymore, it helps to ask what version of it might still be possible. 

Manage Energy

She says to learn what drains you, what restores you, and pay attention to pacing, even if it feels inefficient or even lazy.

Attend to Grief, but Don't Wallow

So you can't escape it, but realize that the painful feeling of loss tends to come in waves rather than tidy stages. Lost abilities, lost identities, lost predictability, and sometimes a shorter life. But you can still have plenty of humor, joy and gratitude.

Redefine Productivity and Self-Worth 

Okay, I have to agree with Chatty here: "Chronic illness exposes how tightly worth is often tied to output... but worth doesn’t disappear when productivity changes. A flexible sense of identity makes coping easier. Rigid before-and-after narratives can trap people in constant comparison with a past that’s no longer accessible."

Guilty as charged. 

Find Community

Chatty advises caution and flexibility with this: sometimes connecting with others who share the same concerns can be deeply comforting, but a constant focus on illness can turn you into a neurotic puddle of anxiety and hopelessness. And yeah, she didn't use those words exactly.

Get Used to Uncertainty

Because there often aren't clear time frames or answers, try to just focus on the next manageable step.

Reimagine Pleasure and Meaning

Hmm, probably no one is still reading at this point, so why not just let Chatty have the floor? "Joy doesn’t have to be big or exhausting to be real. Small rituals, sensory comforts, creative outlets, or quiet routines can carry a lot of weight. A life that looks smaller from the outside isn’t necessarily a diminished one."

My Take 

So it's not a bad list, although like all self-help advice, it's much easier said than done. I'm especially struggling with this one:

"Learning to live with limits, rather than constantly fighting them, is often the real work."

But here's the thing: despite the long-term repercussions, my day-to-day quality of life is still super high.  There are so many other people out there suffering with scarier, more unpleasant symptoms and diseases--battling constant pain or nausea, bedridden or incontinent, losing their memory, vision, hearing, or... well, the list goes on.

I'm really lucky, and deep down I know it. And yes, I have a stubborn attachment to my identity as a bit of a fitness freak. I've been trying to operate under the false assumption that if I just do the right workouts, eat the right food, pop the right supplements, get the right amount of sleep... that I'll live forever, strong and fit and mentally sharp.

Yet as someone entering the "third age" (as they charmingly call Being Old in Spain), isn't the real work psychological rather than what happens at the gym? Failing bodies, compromised cognition, and ultimately death, they're coming for all of us. I'm not special. How can I learn to be happy and grateful for every day I have?

Anyway.

Anyone else have any thoughts or advice on moving on from sulking and griping to graceful acceptance?