Chronic Pain and Caregiving: How to Stay Connected

Chronic pain can easily disrupt one’s social life but maintaining relationships is crucial to healing. Here’s how both parties can better communicate.

In their 2019 book, Living beyond Pain: A holistic approach to manage pain and get your life back, physician James W. Kribs, DO, and therapist Linda S. Mintle, PhD, offer a whole-person approach to pain management. From focusing on the mental and spiritual aspects of pain to providing non-opioid alternatives for pain relief, the book provides research-based hope for those struggling daily with intractable pain. Practical Pain Management (PPM) spoke to the authors about a particular chapter in the book that focuses on relationships and how chronic pain impacts not just the “patient” but also those around them.

Effective communication around needs and limitations must go both ways when living with and caring for complex chronic pain. (Image: iStockPhoto)

Helping or Hurting?

Q: Spouses, partners, family members, and friends want to support loved ones living with pain. But you note in your book that there is a fine line between helping someone with a chronic pain condition and hurting them. How can a close caregiver find the right balance of helping, without impeding progress?

A: Pain affects relationships and relationships affect pain. The task of a caregiver, family member, or friend is to find that right balance between helping and creating dependence. Living with someone in chronic pain often increases feelings of powerlessness and helplessness in that you cannot make the pain stop or make the person feel better. However, you can make sure you are not making the pain worse. For example, you can avoid being overprotective or doing things the person can do for themselves. If the person wants a snack, allow them to get up and get the snack for themselves. Movement such as this can help to reduce pain. If you assist the person in things they can do, which decreases their movement, you may be actually increasing their likelihood of disability.

Q: How can an individual with chronic pain condition and limited functionality better frame requests to their family members when asking for help?

A: Try not to be demanding. Ask for help when you need it but be patient and appreciative of what others do for you when real help is needed. Try not to take advantage of others or depend on them to do things you can do for yourself. For example, say, “Right now, I need help getting up the stairs, but on a good day, I think I can do it alone.” This lets the person know you are working toward better functioning and independence.

 

Frustration and Resentment: Avoid the Rabbit Hole

Q: Just as an individual living with intractable pain may become frustrated by his or her situation, a spouse/partner may also become frustrated and even resentful, especially when household roles change to accommodate for new needs. Why do both partners need to understand about this dynamic?

A: Words are powerful. Whether or not pain is involved, negative words expressing frustration and resentment can worsen a relationship. Complaining or ruminating about a pain problem can keep a couple stuck; their relationship becomes about the pain rather than about other parts of their lives. Thus, how a couple talks about pain is important.

For the person in pain, it is important to be realistic about needs and expectations in order to avoid feelings of anger and disappointment. It is best not to see themselves as a burden, which may lead to depression. Acknowledge your limitations and discuss how you want to handle them. For the partner, be clear about roles and responsibilities. Don’t try to “fix” the problem, but rather, lend emotional support and a listening ear.

Finally, if there is a love relationship, keep love alive. Studies show that love can turn down the volume on pain.

Q: You suggest in your book that “constant conversations about pain will increase pain.” What are some ways family members and friends can frame dialogue without going down this rabbit hole, so to speak?

A: Family members don’t want to ignore a loved one’s pain, but they also don’t want to continue to give their full attention to pain. Distraction is a good way to help (see PPM’s distraction tips and other life hacks for self-managing chronic pain). Also, to show you care about the person, simply ask, “How is it going today?” versus, “How are your headaches today?” This approach may seem like a minor difference in words, but focusing on the person and not the pain is the way to go. To further show support and empathy toward someone in pain, ask “Are you feeling yourself today?” instead of, “Is your pain worse today?” The former question shows concern for the person without focusing on the pain itself.

 

When Social Lives Are Disrupted: What to Say

Q. When living with constant pain, it may be easy to slowly recede from social activities, but you advise in your book that friends should continue to be flexible and include one another in their lives. How can they do this?

A: One of the dangers of living with chronic pain is that you can become isolated and feel rejected. If you have to cancel social plans due to pain, you might feel like you are letting your friends down or being a bad friend. However, socializing keeps a person feeling “normal.” Let your friends know that you had a particular bad pain day but want to continue to be included in plans. Also, let them know that you appreciate their flexibility and understanding. Despite your lack of participation, your good friendship qualities do not have to vanish.

If you are the friend, tell the person in pain that you understand when they have to cancel. Let them know you will keep reaching out. This level of care and understanding can make the person in pain feel better.

Q: Friends may offer common clichés to those in pain, such as “Everything happens for a reason.” What are some more constructive things to say?

A: When you don’t know what to say, say nothing. Just be present and be a good listener. Instead of trying to offer reasons for a person’s pain, offer empathy and compassion. If you have to speak, make it positive. Say something like, “I am glad to have you as a friend and I am so sorry for what you are going through. I want to be here and be supportive. I’ll be flexible with plans and want to encourage you toward a better day. Let’s stay optimistic together.”

“Living beyond Pain: A Holistic Approach to Manage Pain and Get Your Life Back” by Linda S. Mintle, PHD, and James W, Kribs, DO (Baker Books, 2019)

Daily Ways to Practice Communication around Pain

Q: Overall, there is no doubt that chronic pain is complex and challenging. What major takeaways can those living in pain keep in mind when thinking of their close caregivers, and vice versa, for the caregivers?

A: Here are a few suggestions:

  1. Learn more about pain management and how to turn down the volume on pain through conversations and healthy interactions. Pain management requires a body, mind, and spirit approach--all parts of a person are impacted.
  2. Realize that while pain responses occur in the brain, that doesn’t mean the person isn’t feeling real pain in their foot, arm, etc. It does mean the brain needs to be rewired and the central nervous system needs to calm down. So, believe them when they tell you their pain is real. (Learn more about the fight-or-flight response to chronic pain.)
  3. For caregivers, establish a healthy balance of being supportive and helpful rather than and enabling.
  4. Instead of denying pain, help to turn attention away from pain through distractions and other activities that focus on other parts of life.
  5. Advocate for non-pharmacological evidenced-based treatments for chronic pain. There are many beneficial approaches that do not include opioids. Some of those treatments include fighting off depression by staying engaged with friends and family.
  6. Have positive conversations that include gratefulness and focus on things that are going well. Stay optimistic.
Updated on: 12/03/19
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