The surprising impact of chronic pain, on family and money

Chronic pain is the number one cause of disability in the U.S. According to the American Chronic Pain Association (ACPA), one in six people are living with chronic pain. The type of pain can vary with age. People in their 20s and 30s are most likely to suffer from headaches or chronic migraine. Adults in middle age tend to suffer from chronic back pain. The elderly often report pain as a result of arthritis or fracture. The percentage of people in each group does not change as the population ages, making chronic pain a fairly consistent condition. Whatever the demographic, however, the impact of chronic pain is skyrocketing, both on a person’s family life and money.

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The monetary impact of chronic pain

Estimates of the cost of pain can vary widely, depending on what is being measured. A 2003 report from The Journal of the American Medical Association (JAMA) put the annual monetary impact of chronic pain at $62.1 billion. A more recent Institute of Medicine (IOM) report in 2011, “Relieving Pain in America,” puts the economic cost of chronic pain at an estimated $560-635 billion annually.

The JAMA study only counted loss of productivity and did not measure all types of pain, but focused only on headache and some musculoskeletal pain. The IOM estimate looked at all types of economic costs, including loss of productivity, use of medical services, and other financial impacts.

The impact of chronic pain on your work life

According to the results of a National Health and Wellness survey, individuals who suffer from osteoarthritis were less likely to be employed and highly likely to be on disability.  The costs of disability payments are spread among taxpayers, and were included in the IOM report as well.

Missing work due to pain or being perceived as unemployable due to pain can be devastating financially to individual families and society as a whole. This perception can be difficult to change, as chronic pain is generally an “invisible” illness. Common misperceptions of those suffering chronic pain include the following.

  • They are unreliable: Because chronic pain sufferers have good days and bad days, employers may see this as a trait that could impact their productivity. In fact, chronic pain sufferers may be even more reliable. They know their jobs rest on doing what they say they will do, even in the face of pain.
  • They are less productive: Employers may view chronic pain sufferers as less able to perform the functions of their jobs due to pain. In fact, efficiency and effectiveness are the order of the day when chronic pain sufferers are feeling good. They can be even more productive than their coworkers.
  • They use pain as an excuse: Other workers may believe that chronic pain sufferers use their bad days as an excuse to get out of work. In fact, there is zero evidence of this as a characteristic of chronic pain sufferers. Indeed, most are ready and willing to move forward and take on responsibilities and work that gives them purpose and direction. Pain is a medical condition, not an excuse.

Although there are moments when chronic pain can interfere with an individual’s ability to work, a team-based treatment plan can help. Individuals can develop coping strategies that allow them to continue to be productive. An important part of managing the impact of chronic pain is also understanding more about a person’s condition and utilizing creative scheduling to work around bad days.

The social and family impact of chronic pain

The impact of chronic pain is more than dollars and cents. Beyond the dollar signs, the cost of chronic pain is personal and rising. People with chronic pain are more likely to be depressed to the point of attempting suicide, and there are social costs as well. Christopher L. Edwards, phd, assistant professor of psychiatry at Duke University School of Medicine, writes:

“The social costs are incalculable. How do you estimate the value of lost self-worth? How do you estimate the loss of family, friends, and a sense of accomplishment?”

Approximately 100 million people in the U.S. live with chronic pain, but how many families are living through their pain with them? Caregivers of chronic pain patients experience many special challenges. People suffering from chronic pain may feel isolated and ostracized. Their families may not understand, and tensions in the home may compound the issue. The pressure can be extraordinary, and the impact of chronic pain in the family can be deeply felt. Here are just a few of the tasks and challenges the families of chronic pain patients face.

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They are responsible for daily care

For some patients, this may be driving to appointments and coordinating care. For others, this can be caring for the patient physically, including lifting and moving the family member from bed to bathroom to anywhere else they need to go. Other daily tasks can include shopping for and preparing meals that may be specifically tailored to the patient. It could also be reminding the patient to complete any exercises or activities.

These tasks may be done lovingly, but both patient and caregiver can feel resentful and angry at times. The stress of these simple daily tasks can mount up and be overwhelming.  Often, the caregiver is also responsible for other family members, including children who may not understand why they have to wait or not get undivided attention.

They are responsible for dealing with insurance and doctors

Although the patient may be in closest communication with his or her doctor, often the caregiver is responsible for talking to insurance companies and coordinating care across a team of doctors. Advocating for a patient who may be unable to advocate for themselves at times is an important job. There is a tremendous amount of paperwork associated with a chronic illness, and the caregiver needs to be organized and thorough when analyzing benefits statements and bills.

They are sometimes responsible for income

There are chronic pain patients who are able to continue to work and contribute to the household income, but in many cases, the caregiver is also the breadwinner. Even if the pain patient is on disability, the family may need additional income, especially if there are children. Of all of the impacts of chronic pain in the family, this is arguably the most stressful one, affecting daily life in the most basic way. If the caregiver needs to drive the patient to appointments, the stress of missing work and income can be exacerbated.

They are responsible for cheerleading, even when they don’t feel cheery

Chronic pain patients can feel isolated, trapped in their pain. It can be difficult to see the beauty in life when simple movement is excruciating.

Families of chronic pain patients experience this in another way in their sense of powerlessness. Those with a chronic pain in the family see a family member in pain and are unable to do anything concrete to relieve the pain. The only thing they can do is to be encouraging, patient, and kind. They can point out the things the family has to be grateful for, and they can look to the future. This can be a thankless task, and some days their family member in pain won’t want to hear any of it. The challenge is to be the cheerleader, even at the hardest times.

What can you do?

The impact of chronic pain cannot be overstated. It costs the U.S. billions of dollars each year. It’s also costly in terms of mental and social health, affecting families disproportionately. So how can all aspects of the cost of chronic pain be more effectively managed?

1. Develop team-based treatment plans

These can include not only prescription medication, if necessary, but also other holistic treatments. Having a team of healthcare providers that are able to utilize alternative treatments such as diet, meditation, and exercise can make all the difference in the successful management of chronic pain. Working with a pain specialist can help you accurately diagnose your pain and learn more about treatments that could work for you.

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2. Educate employers on chronic pain and help them utilize telecommute options

An employee who is having a bad day may not be able to get into the office, but may still be able to work on projects at home. Offering this as an option can help keep patients with chronic pain in stable employment, which will do wonders for their mental and emotional health. Productive employment is one way to keep the costs of chronic pain down. It also keeps patients off disability and in the working world.

3. Involve families more in your treatment

Families feel the impact of chronic pain on a daily basis, but they may not understand it completely. This lack of understanding can be isolating for the chronic pain sufferer. It can increase the social impact of pain. A strong, supportive family or group of close friends is crucial to managing the mental and emotional impact of pain. Get them involved by talking to them about what you’re feeling.

4. Encourage your family to get the self-care they need

The challenges when there is chronic pain in the family are so extreme that some research suggests that the caregivers risk becoming patients themselves. In a 2014 study, researchers at the Ohio State University Center for Clinical and Translational Science found that “high burden” caregivers, those tasked with care giving for 21 or more hours per week, were highly likely to develop chronic pain themselves.

Researchers interviewed 46 informal (non-professional, generally family members) caregivers and asked them to complete questionnaires. Over four weeks, 94% of caregivers reported pain in at least one part of their body. Amy Darragh, occupational therapist and lead researcher had this to say about the results:

“Almost all of the caregivers who participated in our study said they experience significant musculoskeletal discomfort related to care giving activities, and that this discomfort can interfere with their ability to provide care, work and participate in life activities.”

The researchers found that professional caregivers experienced some of the same injuries. But, since they had access to training and tools to help them with patients, they were less likely to be injured or to have that injury become chronic. Many times those with chronic pain in the family have to dive in with little or no training. This includes the proper way to lift a patient or to complete repetitive daily tasks. These physical issues don’t even measure the potential for mental disorders such as depression or anxiety.

Darragh and her team have received grants to develop protocols for family and non-professional caregivers. Until those protocols are in place and used widely, family caregivers need to be careful and monitor themselves for signs of stress or injury. Taking any classes that may be available through doctors or hospitals can be helpful. You can also stayed informed about groups or respite caregivers who may be able to help when needed.

5. Work hard to increase awareness of healthy lifestyles and living for all people

Chronic pain can be a condition that develops as a result of traumatic injury or accident. But, it can also be as a result of any other disorder or condition that could be prevented by making healthy choices. Eating well and exercising regularly is good medicine for everyone. Encouraging people to get active and stay that way can lower the chances of developing chronic pain. Further, by talking more about your chronic pain, it becomes more normal in the world. Keep up-to-date with blogs like this one, or any of our favorite chronic pain bloggers, to learn tips for reducing the impact of chronic pain on your life.

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