Remember the last time your WiFi went out? How you felt alone in an empty world?
You tried to restart it yourself, to no avail. Then you called tech support, which was as helpful as pouring glue down a clogged drain.
You were baffled that no one had answers and, odds are good, your language wasn’t suitable for kids for the next 90 minutes.
Exasperating, right? Something important you’d taken for granted went awry through no fault of your own, and your day was totally upended.
Now imagine that your health is your WiFi, that disability or chronic illness is the outage, that tech support are folks who truly mean well but don’t know what to do, and that your upended day is each moment of the rest of your life.
The late actress Bette Davis famously declared, “Getting old ain’t for sissies,” and the same is true for living with a disability or chronic illness. Of course, many of us with those issues lead rich lives full of loved ones, work, sex, glee and mischief. And many are unable to enjoy some of the above, despite our best efforts. Disability and chronic illness comprise a gigantic tent where everyone’s experiences are unique and equally genuine.
Here’s what most of us have in common, though: Sometimes we need a little extra help. And it can be awkward to ask for help. Embarrassing, even. But what’s the alternative? When your WiFi goes out, you don’t draw in the sand with a stick.
I’ve had the disabling, degenerative and thus far incurable illness myalgic encephalomyelitis (also known as ME/chronic fatigue syndrome) for 26 years. Which means I’ve spent ample time learning how to ask for help. I hope you can learn from my insights and bypass my mistakes.
I’m writing this while lying flat because I don’t have the strength to simultaneously write and sit up. My right leg sustained nerve damage four months ago, and I now use a walker instead of my usual crutches. And because my immune system has been reduced to pencil shavings, I’m recovering from my third bout of pneumonia in the past decade.
So I’ve had to ask for help quite a bit recently. And I still find it hard. But because I like staying alive, I’ve had to enlist others to accomplish simple tasks. It requires swallowing my pride, acknowledging my body is fallible, and asking directly.
On a good day, I can go outside for three hours; most days, I’m inside for 23. I’ve had long-term serious relationships but am solo now and, some days, even with my amazing friends and boisterous Greek family, the isolation is punitive. (I enjoy solitude and, indeed, need it to write. Solitude is a choice, however. Isolation lands on you like a piano.)
Still, I’m grateful. Among my peers, my difficulties are unusual, but adults know life is hard. Out of the 7.5 billion people alive today, I remain among the lucky. My namesake died under Nazi occupation and lies in an unmarked grave. I have perspective.
This perspective won’t allow me to drive or climb stairs again. It won’t keep me from falling while making a sandwich or getting dizzy in the shower.
But so it goes when your health goes. One friend had a double mastectomy and is still an incredible writer and activist. Another has multiple sclerosis and is a prominent attorney, maneuvering around opposing counsel as deftly as she navigates the supermarket in her wheelchair. A pal of mine who also has ME is in a wheelchair but remains a gifted visual artist. She is strong as hell.
Like me, they have adapted. Also like me, they’d rather sip from a mud puddle than ask for help. As I said, you feel awkward. And often, well-meaning individuals — your tech support — feel awkward, too, as though they’re scared they’ll do or say the wrong thing. Which makes you even less likely to ask for help the next time and the whole shebang becomes a round robin of good people on all sides unsure of what to ask or what to offer.
After a quarter-century of disability, conversations with others in this tent, plenty of therapy and hands-on activism, I’ve learned a few things: Most people in your orbit want to help. A deep trust results when a loved one takes you and your dog to the vet, picks up your prescriptions or changes your lightbulbs. You feel profound gratitude when you open your door in your bathrobe, wool socks and hair looking like kudzu because you’re too ill to bathe and have awful chills, and someone hugs you and says, “I know you’re having a hard week, so I brought dinner.”
But for this trust and beauty to emerge, you actually have to ask, “Could you please help me?” and then keep your request specific. You can’t expect even those who love you most to read your mind. How are they supposed to know you can’t lift the recycling bag?
If you’re the person offering and you’re worried about implying that a loved one is no longer autonomous, go ahead and say it out loud: “Hey, I’m not trying to treat you like you’re a waif, but I’m in your neighborhood and thought I’d check in. Do you need anything?” These are magical words when you’ve been trying for the past hour to walk to the kitchen.
As I said, adults know life is hard. But as is usually the case, it gets so much easier when we help each other out.
Sometimes, you just need to open up and ask.