Caregivers of People with Chronic Pain, An Interview

This is a reprint of an Interview with Hans J Sieber, MC, LPC and Danielle Adams O’Malley, LSCW, originally published in the Pain Reprocessing Weekly, the newsletter for the Pain Psychology Center.  You can sign up to receive this newsletter at: https://painpsychologycenter.com/newsletter

If someone you love lives with chronic pain, symptoms, or conditions, you already know that the experience does not stay contained to one person.

You feel the helplessness of watching someone hurt and not being able to fix it. You carry the long-term worry, the canceled plans, the exhaustion of trying to explain something that is hard to explain. You may have quietly set aside pieces of your own life without anyone noticing, including you

And yet the support systems that exist for people in pain rarely have a seat for you

Two of our seasoned PRT therapists, Hans Sieber, LPC, and Danielle Adams O’Malley, LCSW, created the Caregiver Support Group specifically for people in this position. We sat down with them to talk about what caregivers are actually experiencing, and why having a space of their own makes a difference not just for them, but for the person they love.

A Conversation with Hans and Danielle:

We Asked, They Answered.

 

“There’s no greater support than someone who truly understands because they’ve been in your shoes.”

— Danielle Adams O’Malley, LCSW

 

 What led you to create this group?

Danielle:

I came to this as the parent of a child with a chronic condition. My daughter developed symptoms of MdDS at nine, was diagnosed at twelve, and suffered for ten years before discovering Pain Reprocessing Therapy at nineteen. It was the only treatment that gave her relief, and she is thriving now.   About a year ago, while traveling, my daughter had a symptom flare. Despite all her progress and my training, I was transported right back to when she was ten, flooded with helplessness and isolation. Then I reminded myself: we are not back there. We have tools, and we have a community that understands neuroplastic conditions. I realized how much I wished I had had that kind of support back then.

Hans:

In my work with chronic pain clients, loved ones come up constantly. These relationships matter enormously, but they are often strained by the long-term nature of the symptoms. When I invited spouses and family members into sessions, they told a similar story: they had no support of their own, chronic pain was confusing, and they did not know how to help. When Danielle and I started talking, a caregiver group felt like the natural next step.

What are some of the most common things caregivers describe struggling with?

Hans:

Caregivers often get excited about new information, like Pain Reprocessing, only to find their loved one resistant to hearing about it. They try to coax them into being more active and it does not work. They get their hopes up about a treatment and then struggle with the disappointment. Communication is hard too. Caregivers want to know how their loved one is doing, and people in chronic pain get tired of talking about it.

Danielle:

Worry about their loved one’s future. Resentment over their own diminished life. And guilt for wanting to resume living it. High conflict is also common and often rooted in fear.

How do you help caregivers take care of themselves without making them feel guilty about it?

Danielle:

We talk about the difference between healthy and unhealthy guilt. Healthy guilt is proportional to a real mistake. Say you snap at your loved one after a long day. That is information: you are overwhelmed and need a break. Healthy guilt means recognizing it, apologizing, and planning a timeout for next time.

Unhealthy guilt is ongoing self-blame about things you cannot control. Feeling guilty for saying no because you need rest. Beating yourself up for not asking a doctor a question five years ago. I spent years blaming myself for having my daughter on a boat the day her symptoms began, even though she had been on boats dozens of times before. All that unnecessary ruminating led to burnout, sleepless nights, and wasted energy. It changed nothing about the outcome.

Without self-care, a caregiver’s patience runs empty. And when a caregiver cancels plans and hovers around the clock, the loved one can start to believe “I must really be in bad shape,” which robs them of agency and hope. When caregivers resume their lives, it shifts some responsibility back to the loved one and shows them that life is not dangerous. That supports recovery.

Hans:

First, give yourself permission to actually take care of yourself. Caregivers often feel too guilty to do anything for themselves. But when they do things that are enjoyable and healthy, they have more energy to be good caregivers. We all need balance.  Caregiving can cause real anxiety and depression, and time in a support group or in your own therapy can help you get through.

Was there a moment after that first group when you thought, “This is exactly why this group exists”

Danielle:

It was the very first session, when we invited members to share what brought them to the group. Watching them come together for mutual aid brought tears to my eyes. It is incredibly brave to say, “I can’t do this alone.”

Hans:

After that first session, Danielle and I were both struck by how deeply each person had been affected. They shared frustration, anger, and worry about so many of the same things. It was immediately clear that they felt alone and were craving connection.

If you could say one thing to a caregiver who is hesitant to join, what would it be?

Hans:

You are not alone. Others are going through similar circumstances, and they will benefit from hearing your experiences too. You will learn more about chronic pain and leave with real tools for navigating this. You will be a better caregiver if you give yourself permission to do something good for yourself

Danielle:

I would get curious and ask, “What makes you hesitant?” There is real vulnerability in joining a group and asking for help. But research shows a link between social support and decreased activity in the amygdala, the brain’s alarm center. Reliable support buffers stress and builds resilience.

The connection between caregivers and patients’ pain is stronger than most people realize, and a growing body of research points in the same direction.

A 2023 study published in Frontiers in Behavioral Neuroscience recruited 200 patients with chronic musculoskeletal pain and their family caregivers to examine how caregivers’ beliefs about pain relate to how patients cope with it. Caregivers pain-related beliefs were associated with patients coping strategies, and that link was shaped by how both the patient and caregiver regulated their emotions. In plain terms, how a caregiver thinks about and responds to pain may influence how the patient relates to their own pain. A caregiver who approaches pain with calm curiosity creates a different environment than one who treats every sensation as a threat.

A separate study of 135 chronic pain patients and their caregivers found that caregiver burden was linked to patients’ pain intensity, catastrophizing, anxiety, depression, and disability. Patients with the most burdened caregivers tended to have higher pain levels and lower self-efficacy. Patient pain and caregiver distress appear closely connected, which is why supporting the caregiver can be an important part of supporting recovery.

Alinajimi F, Deldar Z, Dehghani M, Khatibi A. Emotion regulation mediates the relationship between family caregivers’ pain-related beliefs and patients’ coping strategies. Front Behav Neurosci. 2023;17:983350. doi:10.3389/fnbeh.2023.983350.

Tsuji H, et al. Factors influencing caregiver burden in chronic pain patients: a retrospective study. Medicine (Baltimore). 2022;101(39):e30791. doi:10.1097/MD.0000000000030791.