The PainShare: On helping friends and family with chronic pain conditions

Having a loved one who lives with chronic pain can be challenging. Often we yearn to somehow lessen the burden and on the bad days when they are in excruciating distress, the helplessness can overwhelm us.  At times, this can lead to avoidance, we don’t know what to do so we don’t. Sometimes we can create more anxiety for ourselves and them by expressing excessive worry.

Timing and Dosage
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; to not minimize and not smother; to try to understand; 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. The variability can be one of the most difficult factors. One day, your loved one might be optimistic and energetic. A few days later, they may not be able to move out of bed to shower. Often there may be a host of physical symptoms that your loved one might find difficult to even describe because they can range from embarrassing to wordless.

People are not their illness.
When a friend is suffering, whatever the cause, they don’t suddenly turn into another person. Friendship is friendship. 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.

Don’t assume. Ask.
Chronic pain isolates sufferers both physically and psychologically making it difficult for those with pain to interact with the world and their friends. Ask in a straightforward way what somebody needs and how they are.  Let them tell it without having to fix it. If they tell you they had a crap day, that’s what happened.

Don’t play Mother Teresa.
All humans need to feel useful. You’re not there for charity or pity, you’re spending time with somebody you love. They want to have a reciprocal relationship. A close friend who has bouts of unrelenting pain regularly checks on me, makes me gifts, helps me with my work and writing, and spends quality time with me whenever she can.

Become comfortable with uncertainty
One client wrote me: “It was great to have a session in your office today;I can’t predict what my body will dictate on September 1.” A friend told me she no longer makes any plans that require a reservation because she’s not sure if she’s going to be well enough to go. As a friend, be comfortable with changing circumstances. So when you invite someone with CP to join you for a movie, book club, walk, or dinner, assure them 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. At the same time, invite them. Excluding people without asking because you think they’re too fragile is not helpful.

Let them set the schedule.
People with chronic pain have learned how their body works through trial and error. For the most part, they know when they have peaks of energy. They know when they need to do their work, their chores, work on the computer, or go for a walk. They also know when they need to rest and when they want to spend time with you. If you are lucky enough to have a body that doesn’t periodically betray you, go with what they need physically.

Don’t idealize (their) pain.
Sure, you might think they are a superhero or warrior. And they probably are. Admiring people for suffering well, which we do as a society, does not allow them the space for the vulnerability they need to feel self compassionate or ask for help.

Don’t take it personally.
When a person is ill, as a social being, we want to visit, to cheer them up, amuse them, chat, feed 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. They may cancel. They may say they are not available after a certain time of day.  And while it may seem that your friend doesn’t want to see you, the reality is different. They are not rejecting you, they are caring for you and their needs simultaneously.

Don’t be the armchair expert.
It’s likely that your loved one with chronic pain has done extensive research on their own on medication, treatments, and alternatives. If they need specific help with a research area, they will ask you.

Enjoy the beauty of the ordinary
Sharing books, shows and movies, good conversation or chats, laughter, recipes, daily routines, can be very comforting and uplifting. This is especially true when somebody is going through a period of multiple medical appointments, medication changes, frustration with insurance companies, and a new flareup or bout of symptoms.

What to do : be practical, consistent, and warm. 
– I’m making soup/curry/roast chicken tomorrow. Can I bring you some?
– If you drop off items for someone, ask them if you should leave them outside their door, they may not want to see you but they will still appreciate your care.
– I’m going food shopping tomorrow. How about I pick you up some salad fixings, fresh fruit, milk, coffee, tea, cereal, 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?
– I’m in the mood for some canine company. Can I walk your dog?
– I’ll be happy to take the trash out for you (or put away groceries, change cat litter, clean out the refrigerator).
– If they are self-employed and have been unable to work, the financial hardship can provide another layer of trauma and difficulty. Offer to pay a bill or buy groceries.

What not to do/say:
– Make comparisons. (‘I remember the time when I had the flu for two weeks. It was awful having to be in bed’).
– Say: you look great. It’s hard to believe you’re even in pain.
– Say: (Higher Being) only gives us as much as we can handle.
– Suggest that they need to exercise, eat better, take vitamins, sleep more, do yoga, and they will get better.
– Say: it’s in your head, think positive.
– Avoid them because you don’t know what to do.

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