An unlikely connection between the beloved humor of famous author Shel Silverstein and how to love someone who is sick—with a little humor and a LOT of grace.
A short article of ENCOURAGEMENT for daily warriors, friends, family, and caregivers who may (without malice) simply not understand what days are like for the chronically ill or disabled. A few tips from the perspective of speaking the truth in love about things to avoid and things you CAN do to show you care.
As a daily autoimmune disease warrior for two decades, there are good days and bad days. This is not a scholarly article, so to oversimplify, autoimmune diseases from Lupus to Rheumatoid Arthritis (RA) to Psoriasis and many other conditions ravage the body with hyper-reactive immune responses that can lead to systemic inflammation, pain, rashes, gastrointestinal diseases, migraines, and a whole host of symptoms, up to and including widespread organ damage. I recently watched the harrowing journey of a former colleague suffer for over 1,000 days in the hospital, succumbing to the ravages of uncontrollable Lupus.
TV commercials portray some autoimmune conditions as just a rash, but if you take a magic pill or injection, quality of life is restored and these patients smile blissfully on the screen returning to their former quality of life—hiking, painting, enjoying Thai Chi in the park, or chasing after grandkids. I want this for everyone! But in reality, total remission is rare. The majority of chronic disease patients face daily struggles that can result in the loss of mobility, unplanned early retirement from work due to disability, isolation, depression, and other painful realities. If this is your story, or the story of your loved one, know that my heart is with you in true empathy and compassion.
Now to lighten things up a bit. When I was a little girl, one of my favorite poems by Shel Silverstein from Where the Sidewalk Ends was called Sick (pasted below). The premise of the poem is that little Peggy Ann McKay creates a hilarious soliloquy of hypochondriassm in the hopes of staying home from school.
As comical as you'll find the poem, this is what a lot of days are like when you manage chronic conditions, many of which are often coupled together on the same chromosome and can be influenced by our physical environment, stress, emotional and behavioral health, and coping strategies. It's a unique and complex equation for each individual.
Take a moment to enjoy this darling poem and its funny punchline.
Sick
by Shel Silverstein
"I cannot go to school today,"
Said little Peggy Ann McKay.
"I have the measles and the mumps,
A gash, a rash and purple bumps.
My mouth is wet, my throat is dry,
I'm going blind in my right eye.
My tonsils are as big as rocks,
I've counted sixteen chicken pox
And there's one more—that's seventeen,
And don't you think my face looks green?
My leg is cut, my eyes are blue—
It might be instamatic flu.
I cough and sneeze and gasp and choke,
I'm sure that my left leg is broke—
My hip hurts when I move my chin,
My belly button's caving in,
My back is wrenched, my ankle's sprained,
My 'pendix pains each time it rains.
My nose is cold, my toes are numb,
I have a sliver in my thumb.
My neck is stiff, my voice is weak,
I hardly whisper when I speak.
My tongue is filling up my mouth,
I think my hair is falling out.
My elbow's bent, my spine ain't straight,
My temperature is one-o-eight.
My brain is shrunk, I cannot hear,
There is a hole inside my ear.
I have a hangnail, and my heart is—what?
What's that? What's that you say?
You say today is...Saturday?
G'bye, I'm going out to play!"
At age 53, I still love Peggy Ann McKay for many reasons, one of which is that when I am not in a rheumatoid arthritis flare, I seize the day and go out to play! It may just look like running some errands to get out of the house, having coffee with a friend, going for a short walk, doing some light stretching, reading, listening to music, or floating in the pool to get weight off sore joints. And on those Peggy Anne McKay Saturdays, joy returns to my heart.
Often is is not possible for your friend or loved one to have many play days, but I'll leave you with a short list of some PRACTICAL things that I hope bless you.
What NOT to do:
Don't offer too many health gimmicks, supplements, or random medical devices (we know you suggest things from a place of love, but we've likely tried everything).
Avoid platitudes or sentiments like, "I'm praying for you" unless you mean it and will follow up later.
Be sensitive to oversharing about your die hard workouts, intense hikes, amazing travel adventures or things you know the person can't do. We ARE happy for you, but sometimes it really hurts.
Please don't link our illness to spiritual sin - that we're not trying hard enough, or that there must be some reason we haven't been healed.
Positive things you CAN do:
Let people bring up their health status, and if they do, take a moment to listen without distractions. If it's not the time or the place, consider calling or texting the person another time.
Encourage them for the things you see they CAN do. Notice their talents, skills, accomplishments, and positive traits that don't have anything to do with their physical body. Look beyond the wheelchair, cane, a limp or a visible disability. Remember that many disabilities are invisible.
Their illness is not their identity. See them as a person, not a sick person.
Keep inviting them to things (unless they ask you not to). They may pass on a lot of events. They want to be included and loved like everyone does, but they may be waiting to RSVP "yes" to an activity they know they can handle.
Approach them with love and compassion, dignity and respect, like you would any other person. Our bodies may be tired, but our hearts and minds have MUCH to contribute.
DIS- ability just means some things may be difficult or not currently possible, but disabled people have far more ABLE-abilities than seem externally apparent.
Please take this article in the spirit in which it's intended. This message is NOT to preach, but to share insight from someone who wants you to be a true encouragement to others and to avoid some innocent pitfalls that may actually discourage.
Thank you for being someone who cares, who is trying, who seeks to understand. God sees your heart even when it seems no one else does.
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