A decade ago I suffered a bulging, herniated disc in my back. It took months to get in to see a specialist, get a diagnosis, and find a treatment plan that worked to heal my body. For a year I dealt with constant, moderate-to-severe pain in my lower back, hips, and right leg.
Within weeks of my injury, I hardly recognized my life. The pain upstaged everything with its constant nagging. Sitting was particularly excruciating so my world shrank to a ten-mile radius around my home. My otherwise sharp and creative brain was scrambled into an unrecognizable slop. Sometimes the pain was so bad that I had trouble finishing sentences. My joyful, focused, and friendly personality morphed into something more impatient and irritable, always distracted, and often discouraged. Engaging with cherished friendships and hobbies became work, and that made me feel ashamed and frustrated.
A new back injury sustained this summer has me thinking of that dastardly year. As I make another slow and difficult climb toward wellness, I find myself drawing on lessons learned a decade ago. Coincidentally, I have several friends struggling with chronic pain right now, so it’s time to resurrect the “When Someone You Love” series. Here are some thoughts and tips on caring for people with chronic pain.
Believe in Pain You Cannot See
Unfortunately, we humans often only pick up on, and respond to, obvious signs of suffering: scabs and angry bruises, someone grimacing or limping, a limb wrapped in a brace or cast. Physical signs of pain trigger our compassion and helpfulness. But consider this—there are hundreds of conditions that cause physical pain which are invisible to others.
It can be difficult to accept that someone is in pain if you can’t see changes or limitations. So here’s your first opportunity to care well—believe your loved one when they say they are in pain. Tell or show them that you believe them. Ask how you can make adjustments or accommodations to make daily life more manageable for them.
Affirmation over Easy Answers
For many, chronic pain leads to challenging side effects: isolation from beloved friends and activities, irritability, physical and emotional fatigue, and loss of mental sharpness. Simple, everyday tasks become arduous challenges. Getting dressed winds you like running a 5k. Writing a daily report has the gravity of a dissertation. When you roll this nasty jumble of side effects together, you’re left feeling discouraged and disconnected. Less alive. Less you.
If one of your beloveds is in pain, then YOU are one of the best caregivers they could find. You’re even better than their doctors because you know who they are underneath all this pain. You can see what has changed and what has not. So, in real moments, tell them how you see their spirit or their strength shining through the pain. Have they done or said anything lately that displays their unique personality? Simply letting them know how and when you see them will be life-giving.
And please, steer clear from clichés or easy answers like “it’ll get better soon” or “God won’t give you more than you can handle” or “focus on the positive.” Caregiving clichés are like wielding a velvet hammer. Despite good intentions, they make suffering people feel like they are failing or inadequate, and they often amplify feelings of weakness. With some careful thought you’ll be able to do something much better—speak words that are true about them. Words that are empathetic and truly soothing.
Connect with Coping Skills & Self-care
Back in my chaplaincy days, I often asked my patients to reflect on times of pain or difficulty in their past. With those in mind, I’d then ask what worked, and what didn’t. How did they face those challenges head on? What things helped them get through an hour, a day, or a week? What kinds of practical support did they need from others?
This reflective process acknowledges that they are an important voice (even an expert voice) in their own care, and it reminds them that they already have valuable internal resources from which to draw.
Chronic pain may be new for your loved one, but you’ll find that coping skills and coping support are amazingly flexible. They tend to adapt to new scenarios. Help your loved one remember what’s worked in the past and encourage them to try it out now.
Other than coping skills, chronic pain sufferers need to practice self-care. Over the past three months, I’ve spent hours resting, and icing and heating my hurting back—otherwise known as caring for myself—but I’m often emotionally drained. Self-care for me right now is not the things I do everyday to get through the pain. Self-care is doing the things that nurture my soul when I’m healthy.
Last week I had what I call “a good pain day” so I went out, bought a movie ticket and a lime Diet Coke, and settled into the local theater’s leather recliner. This is one of my favorite me-time things to do. Unfortunately, the chair was too soft for my back so I didn’t make it through the whole film before I went home, but I was sublimely happy that I got out of the house and enjoyed half of a good movie. That outing restored my positivity for several days.
What does your loved one normally do to nurture their body/soul/spirit when they are healthy? Can they continue that self-care routine despite their pain? If so, encourage them stay engaged in these things.
Beware Treatment Suggestion Fatigue
Treatment Suggestion Fatigue is my evil pet name for a very real thing for chronic pain sufferers. When we share about our struggles with family and friends, these well-meaning people barrage us with advice.
“Have you heard of Dr. Adams and his revolutionary treatment?”
“Have you ever tried cryotherapy?”
“You should ask for vicodin. That’s the good stuff.”
“I just read about the wonders of fish oils!”
“My grandmother’s chicken soup cures all.”
“Physical therapy helped me after I broke my leg.”
Please hear this, friends. You all have different opinions of what is best, and what worked for you or your grandma. But what worked for you might not work for me. The pain of a broken leg is very different from nerve pain. You might rush toward prescription narcotics, but I may have five very important reasons why I won’t or can’t use them. So be cautious of how and when and what you suggest.
As a rule of thumb, ask a question before you make a suggestion. The questions “what have you tried?” and “are you looking for suggestions?” are far more caring than any sentence that starts with “you should try” or “for me the answer was…” Pain sufferers will hear the difference in your words. Asking questions first shows that you respect them as the intelligent, intuitive keeper of their body.
Special Note: When Chronic Pain is Here to Stay
Sadly, there are many painful conditions and diseases that last for years, even lifetimes. While most of us will celebrate an end to our chronic pain, for some pain will be part of their new normal. This type of chronic pain is a different beast altogether and deserves its own post, but I want take a moment to address this reality.
Overall, I encourage you to be compassionate — both to your loved one and to yourself — to be flexible, and to be keen listeners.
I’ve noted that dealing with pain effects mood and personality. It’s also true that long-endured struggles tend to change us. When chronic pain becomes lifetime pain, it will likely alter your beloved’s personality permanently. (Pause and read that last sentence again.) You’ll need to wrestle with and accept that they may never return to the same person you knew before the pain came. They may be more irritable, less positive, or have a new edge to their humor. But don’t give way to discouragement! The changes won’t be all bad.
My bouts with chronic pain have made me more sensitive and compassionate to others in pain. They’ve helped me let go of my need to be in control. I’ve learned to acknowledge and accept limitations, to be kinder to myself, to ask for help, and to really believe that needing help doesn’t mean I’m weak or pathetic. It means I’m human.
All of this ultimately encourages and challenges me to entrust more of my life to the all-powerful, loving God I worship. And in doing that, I become more whole.
May God bless you, caregiver, with abundant grace and peace. May you use the overflow to nurture your beloved’s health — body and soul. I pray for swift healing and for many moments of joy in the waiting.