Friends often don’t know what to do and what NOT to do or say when someone they care about develops a chronic pain condition. We asked chronic pain sufferers to share their advice to help guide friends eager to be supportive, encouraging, helpful, and understanding.
My friend Kathy once derided me for not telling her I’d hurt my back and that the pain and stiffness had kept me house-bound for days. “I would have come over with food and kept you company,” she said. I was surprised by her obvious annoyance. For many years, Kathy had been living with Stage 4 breast cancer. She was in and out of hospitals for monitoring, tests, and treatment. She lived with varying degrees of pain.
“I didn’t want to bother you,” I explained. In truth, I felt as if I’d be courting sympathy for something minor (my sore back) from someone dealing with a life-threatening illness on a daily basis.
But Kathy wasn’t having it. “Cancer is what I have, it’s not who I am,” she said. “I’m also your friend.” And she reminded me that she was more than capable of saying “no” if she wasn’t up to it.
I learned an important lesson about making assumptions: Don’t.
A couple of months later when I came down with a bad case of the flu, I called Kathy. She brought chicken soup and tissues and kept me company. We laughed a lot.
To Be or Not to Be
When a friend or family member develops or is living with a chronic pain condition, we all struggle with how to be and how not to be. We all want to be compassionate and supportive; to be helpful without being intrusive; and to cheer them up whenever we can.
While dealing with a friend’s illness is never easy, chronic pain conditions are especially difficult because the pain can vary in intensity from day to day, symptoms wax and wane and sufferers often don’t reveal the pain. Sometimes, chronic pain isn’t visible. As one Lyme disease patient put it, “Just because I don’t live my pain out loud every day doesn’t mean I’m not in pain.”
LaRita Brallier Jacobs has another view. “It’s not fair if you lament that friends and family just don’t get how exhausting chronic pain is if you’re spending all your energy pretending to be Superman/woman,” she says. “I did that for too long.” Brallier Jacobs of Seminole, Florida, has been living with rheumatoid arthritis for more than 20 of her 56 years.
Working Through It
When a friend is suffering, whatever the cause, they don’t suddenly turn into another person. All their good and bad qualities remain and sometimes become magnified. Now and then, one or both of you many offend, anger, or disappoint the other. Mistakes will be made on both sides. That happens between close friends even when illness isn’t a factor. When these missteps and misunderstandings happen, acknowledge the situation and have a calm conversation with your friend about what happened and why and how to avoid the quarrel in the future. Then apologize to each other and move on.
There will be bumps in the road but we hope the dos and don’ts we’ve compiled provide insight and wisdom that will help you minimize the chances of saying or doing the wrong thing and maximize your chances of being the friend you’d want if you were the faced with chronic pain or illness.
#1. Don’t assume. Ask.
Chronic pain (CP) isolates sufferers both physically and psychologically making it difficult for those with pain to interact with the world and their friends. “All humans need to feel useful,” says Brallier Jacobs . “When friends allow me to help them, I feel useful,” she says. From January into April, Brallier Jacobs prepares tax returns for friends. Of course, she makes sure her “clients” know that she needs ample time to finish the returns. No last minute filers for her. “I can’t predict what my body will dictate on April 14th.”
The uncertainty of chronic pain shouldn’t stop you from inviting your friend to join you or a group of friends for dinner, a movie, or any other activity. “Don’t automatically assume chronic pain sufferers can’t participate,” says Tara Langdale-Schmidt, 32, of Sarasota, Florida. “Invite them so they won’t feel left out,”
For years Langdale-Schmidt suffered from severe vulvodynia, a condition that causes intense sharp, stabbing, and burning pelvic pain. She’s since found a treatment that has diminished her pain. Even so, she knows chronic pain is unpredictable. A person can go from having a good day to a bad one in minutes, explains Langdale-Schmidt.
So when you invite someone with CP to join you for a movie or dinner, assure him or her that the invitation is non-binding and that if they have to cancel—even at the last minute—you will understand. An invitation without obligation is one that a person with CP may feel more comfortable accepting.
#2. Don’t take it personally.
When a person is ill, we want to visit, to cheer them up, amuse them or just keep them company. But for people with CP, the unpredictability of their pain makes it difficult to plan and engage with visitors. They may decline your offer to visit. And while it may seem that your friend doesn’t want to see you, the reality is different. “These decisions [to see or not to see friends] are not made lightly,” says Alyssa Relyea.
For over 15 years, Relyea has lived with the constant pain and dysfunction of severe temporomandibular joint disease (TMJ). The disorder affects the way she talks, smiles, eats, and laughs. Relyea who volunteers at the American Foundation for Suicide Prevention, where she serves as the Chairperson for the Women’s Outreach Committee, says that she has to “make decisions every hour of my day about who I will talk to, how much ,and whether I need to say no.”
So even if your friend repeatedly turns down your invitations to go out or to drop by, keep asking (always ask if you can visit, never arrive unexpected) and don’t take the “rejection” personally. Saying “no” to your visit isn’t a reflection of your friend’s affection for you. Rather, it’s an indication of how they are feeling on any given day.
#3. Don’t touch without asking.
When you do meet up with or visit your friend, always ask if it’s OK to hug or touch them. People with diseases that cause nerve pain—Lyme disease, fibromyalgia and Complex Regional Pain Sydrome/Reflex Sympathetic Dystrophy (CRPS/RSD), for example—have an increased sensitivity to touch. Barby Ingle, President of the International Pain Foundation has CRPS/RSD. A touch, a hug, or even a handshake “can send me into a flare for minutes, hours, or days,” says Ingle.
#4. Don’t criticize. Do encourage.
It’s easy to fall into the trap of offering unsolicited advice about what the person with CP should be doing or might consider doing. Although it may be well-intentioned, suggesting therapies or treatments you’re read or heard about probably isn’t a good idea unless you know your friend welcomes that input.
“Very often chronic pain requires more than pulling up your boot straps and digging in,” says Relyea. “It’s easy to stand outside a situation and see what you think needs to be done to relieve pain, but you probably don’t have the whole story.” Relyea resents it when people tell her to exercise more. “I exercise plenty and am very active,” she says, noting that the person offering that bit of advice isn’t living in her shoes.
Also, keep in mind that people in pain need encouragement to become their own best advocate and to stand up for themselves. “When it comes to their care, people have to be OK with the choices they make,” says Ingle. “If someone says, ‘I wouldn’t do that treatment [for whatever reason], and you shouldn’t either,’ I remind them that we are all individuals.” The moral: don’t push your agenda on others.
#5. Do offer help. Don’t ask open-ended questions like, “What can I do to help?”
It’s important to know what you’re comfortable doing and what’s simply not in your nature. If you’re someone who can’t handle hospitals or doctors, don’t offer to accompany a friend to a medical appointment. Instead offer to do something that suits your skills and personality: run errands, make meals, shop for groceries, do laundry, etc. If you’re a fantastic organizer or a wiz at straightening out medical insurance, offer those skills. You get the idea.
Be specific so you friend doesn’t worry that they’re asking you to do something you really don’t want to do. Also, consider that it’s easier and more comfortable for the person with CP to accept your offer if it’s presented in the context of something you’re already doing. For example:
- I’m making a chicken tomorrow. Can I bring you some?
- I’m going food shopping tomorrow. How about I pick you up some salad fixings, fresh fruit, milk, coffee, tea, and any other staples you need?
- I’m taking my kids to the park tomorrow. I’d love to take your kids along to keep mine company.
- I’m running a bunch of errands this afternoon. I can easily check some items off your to do list while I’m at it. Do you need anything mailed, picked up or dropped off at the cleaners or shoemaker?
- I’m in the mood for some canine company. Can I walk your dog?
# 6. Top 10 Things NOT to say
- The pain is in your head. (And we don’t mean a migraine.)
- It could be worse. (This one is particularly grating. It can always be worse.)
- Consider the alternative. (Not helpful.)
- God never gives us more than we can handle. (Unless you know for certain that your friend is actively religious and is motivated by this belief.)
- Everything happens for a reason (see above).
- God works in mysterious ways. (see #4)
- You can will the pain away. (No, you can’t.)
- You don’t look like you’re in pain. (Self-explanatory)
- If you exercised more, took vitamins, slept more, danced more, etc., you’d feel better.
- Maybe you should try this or that therapy. (If you have medical expertise or personal experience or if your friend brings up a particular therapy they’re interested in, helping them make a decision is fine. Otherwise, don’t play doctor.)
The Magic of Ordinary Days
When every day is a struggle, sometimes the best gift a friend can give to a friend with CP is the assurance that you’ll be there through it all. Living with chronic pain is a wrenching struggle. My friend Kathy once said it made her long for the joys of the ordinary. It’s a sentiment echoed in the 2013 book, How To Be A Friend To A Friend Who’s Sick. In it author Letty Cottin Pogrebin, shared what she’d learned after being diagnosed with breast cancer in September 2009 at the age of 70. There are times, she wrote, “When the kindest thing you can do” for the ill “is to confer upon them the honor of the ordinary.”