Family Caregivers Face Financial Burdens, Isolation and Burnout

By Dr. Kathy Lee, University of Texas at Arlington

Millions of Americans have become informal family caregivers: people who provide family members or friends with unpaid assistance in accomplishing daily tasks such as bathing, eating, transportation and managing medications.

Driven in part by a preference for home-based care rather than long-term care options such as assisted living facilities, and the limited availability and high cost of formal care services, family caregivers play a pivotal role in the safety and well-being of their loved ones.

Approximately 34.2 million people in the United States provide unpaid assistance to adults age 50 or above, according to the Family Caregiver Alliance. Among them, about 15.7 million adult family caregivers care for someone with dementia.

Help celebrate National Caregivers Day (Feb. 16) by thanking someone who cares for a disabled loved one.

Challenging Situations

I am a licensed clinical social worker and an assistant professor of social work studying disparities in health and health care systems. I focus on underrepresented populations in the field of aging.

In my research focusing on East Asian family caregivers for people with Alzheimer’s and related dementia, I discovered that Chinese American and Korean American caregivers often encounter challenging situations. These include discrimination from health care facilities or providers, feelings of loneliness and financial issues. Some of these caregivers even find themselves having to retire early because they struggle to balance both work and caregiving responsibilities.

My findings join a growing body of research showing that family caregivers commonly encounter five specific challenges: financial burdens, limited use of home- and community-based services, difficulties accessing resources, a lack of knowledge about existing educational programs, and physical and emotional challenges, such as feelings of helplessness and caregiver burnout.

However, researchers are also finding that family caregivers feel more capable of managing these challenges when they can tap into formal services that offer practical guidance and insights for their situations, as well as assistance with some unique challenges involved with family caregiving.

Most Caregivers Are Women

More than 6 in 10 family caregivers are women.

Society has always expected women to take on caregiving responsibilities. Women also usually earn less money or rely on other family members for financial support. This is because equal pay in the workplace has been slow to happen, and women often take on roles like becoming the primary caregiver for their own children as well as their aging relatives, which can drastically affect their earnings.

While nearly half of care recipients live in their own homes, 1 in 3 live with their caregivers.

Sometimes termed “resident caregivers,” these individuals are less likely to turn to others outside the family for caregiving support, often because they feel that it’s important to keep caregiving within the family. These caregivers are typically older, retired or unemployed and have lower income than caregivers who live separately.

According to a 2020 report from the AARP Public Policy Institute, about 1 in 3 family caregivers provide more than 21 hours of care a week to a loved one.

Support Programs for Caregivers

Caregiving often creates financial burdens because it makes it harder to hold a full-time or part-time job, or to return to work after taking time off, particularly for spouses who are caregivers.

Often, community-based organizations such as nonprofits that serve older adults offer a variety of in-home services and educational programs. These can help family caregivers manage or reduce the physical and emotional strains of their responsibilities. However, these demands also can make it difficult for some caregivers to even learn that these resources exist, or take advantage of them, particularly as the care recipient’s condition progresses.

These challenges worsened at the height of the COVID-19 pandemic. Many support programs were canceled, and it was hard to access health care, which made things even more stressful and tiring for caregivers.

Research shows that those who are new to family caregiving often take care of their loved ones without any formal support initially. As a result, they may face increased emotional burdens. And caregivers age 70 and above face particular challenges, since they may be navigating their own health issues at the same time. These individuals are less likely to receive informal support, which can lead to social isolation and burnout. 

There are numerous programs and services available for family caregivers and their loved ones, whether they reside at home or in a residential facility. These resources include government health and disability programs, legal assistance and disease-specific organizations, some of which are specific to certain states.

In addition, research has found that providing appropriate education and training to people in the early stages of caregiving enables them to better balance their own health and well-being with successfully fulfilling their responsibilities. Many community-based organizations, such as local nonprofits focused on aging, as well as government programs or senior centers, may offer case management services for older adults, which can be beneficial for learning about existing resources and services.

For family caregivers of people with dementia, formal support services are particularly crucial to their ability to cope and navigate the challenges they face.

Formal support may also be helpful in finding affordable home-based and community resources that can help compensate for a lack of informal support. These include home health services funded by Medicare and Medicaid-funded providers of medical and nonmedical services, including transportation.

Medicaid, which targets low-income Americans, seniors, people with disabilities and a few select other groups, has certain income requirements. Determine the eligibility requirements first to find out whether your loved one qualifies for Medicaid.

The services and support covered by Medicaid may vary based on a number of factors, such as timing of care, the specific needs of caregivers and their loved ones, the care plan in place for the loved one and the location or state in which the caregiver and their loved one reside.

Each state also has its own Medicaid program with unique rules, regulations and eligibility criteria. This can result in variations in the types of services covered, the extent of coverage and the specific requirements for accessing Medicaid-funded support.

If so, contact your state’s Medicaid office to get more information about self-directed services and whether you can become a paid family caregiver.

Medicare may help pay for certain home health services if an older adult needs skilled services part time and is considered homebound.

This assistance can alleviate some of the caregiving responsibilities and financial burdens on the family caregiver, allowing them to focus on providing care and support to their loved ones without worrying about the cost of essential medical services.

Peer-to-peer support is also crucial. Family caregivers who join support groups tend to manage their stress more effectively and experience an overall better quality of life.

Kathy Lee, PhD, is an Assistant Professor of Gerontological Social Work at University of Texas at Arlington. Her primary focus lies in exploring innovative and non-pharmacological interventions for individuals living with Alzheimer's disease and related dementias, as well as providing support for their family caregivers.

This article originally appeared in The Conversation  and is republished with permission.

Why You Shouldn’t Be Afraid to Ask for Help

By Barby Ingle, PNN Columnist

We all have lives to lead and sometimes we must focus on ourselves before we can help others. There's nothing wrong with that.

But what if your health (or lack thereof) prevents you from accomplishing something good for yourself and others? What can we do to become more independent and productive while living with a chronic pain condition or disease? 

Here are three things to consider:

1. Social isolation is not healthy

2. Independence can be healthy

3. It's okay to ask for help  

One of the people in my life is the most independent person I know. “Em” only asks for help when she needs it, but often fails to recognize when the need arises. If Em asked for help more often, things might have gone differently in her life and been much easier.

I've been thinking about this recently. I've been balancing my need for independence as a person in pain with my desire to be more open with people. We all want to feel more independent from our caregivers, family and friends. But we also want to stay connected. Seeing some of the challenges in Em’s life reminds me to ask for help more often.

In my books and columns, I have freely shared my life experiences, tips, tools and resources to help others. That helps me feel open and transparent, but it's usually about things I have been through and already found solutions for. When faced with a new challenge, I recognize that I isolate more than I should.

Like my friend Em, I need to find more ways to connect and ask for help when needed. We all need support from others, even if it's just someone listening or offering advice on handling a situation.

When I’ve asked for help, it didn't always go how I envisioned. I may have asked the wrong person for support or had expectations I put on that person that they could not live up to. I had to learn to be okay with the service they offered, rather than be upset and sad when they could not provide what I expected.

The more I learned about their strengths and what they could do, the better I felt asking for their assistance. Asking for help shows that I trust them enough to let them into my world. When you ask for help, you are not weak. You are human.

Asking is not always easy. You have to stop pretending that you can handle everything yourself and that everything is fine. You need to accept the support of your friends and family without feeling like you’re burdening them or making them feel bad about themselves. Asking shows them how much they mean to you.

Here is an excellent example of a recent conversation I had with Em about a friend who wanted to be more social and live life more fully. Em recognized her own limitations. 

"She asked me to meet with her more regularly. Saying she needs people in her life at this difficult time. I am unable to 'be there' for people. I am okay with hanging out occasionally, but I barely have the energy to do basic things each day," Em told me.

My response to Em was this:

"I get it. Explain that you are a chronically ill patient and enjoy connecting when you are up to it, but physically hanging out or texting, talking and engaging cognitively takes a toll on your energy and health. You understand her desire to remain social and the life challenges it takes to follow through. You do best by text, when you have the flexibility and health to answer. You understand her need to be flexible too. She will be in your prayers. Tell her not to be upset if you have to turn down an invite. It doesn't mean you don't want to connect, just that you will participate when you can." 

We must learn how to manage our emotions better so that they don't rule our lives. That means taking a step back so that we don't make decisions while in the middle of a panic attack or depressive episode. And sometimes we just need to hear the answer and decide what to do with it.

Asking for help is complex and we won’t always get what we want. At the same time, we have to step out of our discomfort to make social connections, take down our protective walls, and connect with humanity. Being your best advocate, having others in your life, and maintaining boundaries will help you live life to the fullest. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

How Chronic Pain Affects Relationships

By Victoria Reed, PNN Columnist

People with chronic pain are often engaged in a battle with their own bodies. Unfortunately, sometimes we also struggle to be believed and supported by family members, friends and doctors. While some may be fortunate to have a supportive spouse or significant other, many pain sufferers lose their life partners along the way, as well as friends.

Pain can take a toll on our relationships. In my own experience, a good friend slowly faded into the background during a particularly difficult time when I was having numerous flares from rheumatoid arthritis and fibromyalgia. The flares cause debilitating fatigue and severe pain. I would often need to cancel plans and never could (and still can’t) predict which day I would wake up feeling awful.

Sometimes when I did not cancel plans, I would end up being miserable the entire time and would regret my decision. Eventually, the invitations and phone calls dwindled, as I was probably considered unreliable.

During that time, I would go for weeks struggling to function and keep going for the sake of my family and young children. But life doesn’t stop when you have a chronic illness. Homework still has to get done, as well as housework, financial matters and shuttling the kids to and from school and to sporting events.

One time, as I was driving my daughter home from gymnastics practice, I was so tired that my car ended up nose to nose with another car in a turning lane! I just barely missed having a head-on collision! Fortunately, the woman I almost hit wasn’t angry, but was actually concerned and asked if I was okay. The experience was frightening because I’d put my child in danger by driving when I was so fatigued.

It was then that I realized how serious my fatigue was and worried about the effect it was having on my relationships and family. Unless you actually experience this kind of fatigue, it can be hard to really understand it.

Additionally, my husband (at the time) was having trouble coping with my illnesses. We had been married for 18 years when we decided to divorce. I obviously wasn’t the same person that I was in the beginning and couldn’t contribute an equal share in the relationship.

The truth of the matter is that chronic pain is hard on everyone. It takes its toll not only on those physically suffering, but on spouses and significant others as well. Some make it known that it’s not working, while others quietly build resentment until they can no longer stay in the relationship. Then, seemingly out of nowhere, it’s “I want a divorce” or “I’m leaving” or “I can’t do this anymore.”

Perhaps they are overwhelmed by increased household chores and responsibilities or feel neglected in some way. Or maybe they fall out of love because you are not the person they married or agreed to be with. Perhaps they are stressed because of the additional financial burden resulting from your lack of income. Perhaps they don’t believe in your illness or think that you are faking your symptoms.

I certainly don’t have all the answers, but you must then pick up the pieces, move on and try to create a new life for yourself. If you have kids, you may have guilt about having an illness or believe that you are the cause of your family’s dismantling. 

Having chronic pain is like having a third person in the relationship. That “person” demands constant attention and spends many hours trying to get between the two of you, taking time away from you and your loved one.

However, if you are lucky enough to have that special someone who is capable and willing to deal with your chronic illness and truly understands and accepts, it might not mean the end of your relationship. Many people do stick with and endure the challenges of having an ill partner. It takes a very special person to be able to do that.

It’s good to have a few good friends who are supportive and understanding, rather than a bunch of people who say they are friends, but never step up to the plate. I’ve learned that family members who can’t be supportive have no place in my life. I believe it’s important to surround myself with positive people. Negative people can be emotionally draining and almost always are takers, rather than givers.

Those of us who have been abandoned must move on for our own emotional and physical well-being. As awful as it might seem at the time, it gives us the opportunity to meet new people who are able to give the love, support and compassion that we deserve.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

Chronic Pain Runs in My Family

By Victoria Reed, PNN Columnist

While I was growing up, I knew my mother used a lot of over-the-counter pain relievers. At the time, I didn’t think much of it. As a child, I didn’t view my mother as sick, especially since she rarely went to doctors.

I knew she had a history of major back surgery, and besides being frequently tired and living with sore muscles and a lack of sleep, she seemed to just carry on without the help of doctors.

Now as I look back and take a closer look into the past, I believe my mother suffered from the same or similar chronic pain conditions as I do: degenerative disk disease, fibromyalgia and possibly rheumatoid arthritis.

Two of my sisters also suffer from degenerative disk disease, fibromyalgia, RA and lupus. My brother had severe scoliosis and longstanding chronic back pain. He lived most of his life in pain and died at a relatively young age. In addition, a maternal aunt had chronic pain from multiple sclerosis and eventually died from the disease.

I often wondered if there was anything I did to earn my many diagnoses, but knowing my family’s history has answered that question for me. Studies show that some chronic pain conditions and autoimmune conditions do, indeed, have a genetic origin. This genetic predisposition can be activated by something in the environment, such as a virus, and subsequently could trigger the onset of an illness.

When one of my sons was 6-years old, a respiratory virus caused his immune system to attack his kidneys, resulting in renal failure. He had glomerulonephritis, a condition where the kidneys’ filters become inflamed and scarred. The result is that waste products build up in the blood and body. He had only 15% of his kidney function remaining at the time of diagnosis.

Unfortunately, my son received three misdiagnoses in the two weeks prior to receiving the correct one! Being a fierce advocate for him and knowing with a mother’s intuition that something was seriously wrong, I pushed for doctors to not dismiss his symptoms and look deeper for the problem, as he had begun to swell up. Without proper treatment, he could have ended up on dialysis, the kidney transplant list or suffered from chronic kidney disease for the rest of his life.

Fortunately, after finally getting an accurate diagnosis and quality in-patient supportive care, he began to recover. Today he is a healthy, active 19-year-old with no residual kidney problems.

My 16-year-old daughter has also been diagnosed with fibromyalgia. She suffers from muscle pain, soreness and severe fatigue. I have seen doctors unwilling to take her complaints seriously and unwilling to treat her with anything.

Furthermore, one of my sons also has scoliosis, and having seen what my brother experienced, his future concerns me as well. Many people with scoliosis suffer from back pain throughout their lives.

I am concerned about what my children’s futures may look like, in light of the difficulties that many chronic pain patients face today. As a mom, I will continue to advocate for my daughter’s care and encourage her to advocate for herself as she grows up. It is my hope that compassion and willingness to treat patients properly will return to the specialty of pain management. Parents should not have to fear that their children will be allowed to suffer.

I’m sure that my family is not unique. Families with multiple chronic pain conditions should rally together for support, understanding and most importantly, adequate pain care!

My sisters and I often compare notes and discuss our various treatments. We support each other through our toughest days, and just having that emotional support from each other makes a world of difference. However, many in our chronic pain community do not have that kind of support and are either not believed or taken seriously. Support groups can be very useful in these situations, and I have found that they are helpful. Being a part of a support group assures me that I am not alone in my struggles.

I encourage anyone who feels alone to reach out to someone or join a support group. With social media, it’s now easier than ever to be connected with people when there is no family support.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

Finding Grace in Family-Induced Pain and Trauma

By Cynthia Toussaint, PNN Columnist

About 20 years ago, my mother called to share what felt like a disorientating thought.

“Cynthia, of all the members of our family, you’re the together one, the capable one and the successful one,” she said.

Though flattered, my thinking was, “How can that be? I’m the daughter with all the problems. The pain, the wheelchair, the one left childless without her show-biz career.”

I’m guessing now that my mother was intuitively letting me in on a secret -- a generations-long family secret. By telling me I had the right stuff, Mom was revealing that I’d broken the trauma cycle. She potently advised that I never let my family members hold me back, to “never not succeed because of them.”

That day I realized I’d done something exceptional, but I didn’t fully understand what it was. You’d think 38 years of chronic pain would have opened my eyes, but it took a cancer crisis for me to deeply examine what my mother was shedding light on.

I come from a profoundly dysfunctional family (domestic violence, divorce, mental illness, suicide, alcoholism, etc.), one so traumatizing my doctor believes that the toll of trying to fix my family, along with the inflammation of CRPS, was what gave me cancer. To have a chance at survival, I had to walk away from the toxic members of my family, which was the hardest and best decision of my life.

Unfortunately though, walking away might not be enough. Now that I’m in remission, I’m concerned that my inability to unlock from my frequent harmful thoughts about the trauma of past assaults will bring on a swift and more aggressive cancer recurrence.

Trauma Release

Enter EMDR (Eye Movement Desensitization & Repossessing). For the uninitiated, EMDR is a psychotherapy treatment designed to alleviate the distress associated with traumatic memories. For years studies have shown that people with serious adult-onset illnesses – including high-impact pain and cancer – experienced many adverse childhood events (ACE’s), as I did.

I’ve long considered doing EMDR for trauma release, but feared stirring up the debilitating depression that my family often sparks. I won’t lie to you. My EMDR plunge has been god-awful, as it’s brought on a ton of expected grieving and even rage. That being said, I’m sticking with it - and astonished by EMDR’s effectiveness and the insight it evokes.

My phenomenal practitioner, Kathy, has pointed out two major, life changing themes. The first, that family trauma is handed down over many generations, adversely changing our gene expression through what’s termed epigenetics. Sadly, I was born into the thick of this ever-rolling harm.

When I was seven, my dad jumped off a bridge due to severe mental illness. Much dysfunction led to his suicide, but this was the tipping point that my family of origin never recovered from.

After sharing what limited knowledge I had of my dad’s past, Kathy quickly assessed that, like me, he had a traumatic childhood. I was stunned to learn that his parent’s alcoholism, affairs and abandonments, along with all of the denial and covering-up, deeply wounded him. That insight gifted me great empathy for the person who shattered my world.

Mom’s side of the family was equally trauma-inducing. After her parent’s ugly divorce and Grandma having my loving grandfather committed to an institution, she had my mother kidnapped. Legend has it that this broke my aunt Grace’s heart, as her agonizing death from leukemia at age 20 soon followed.

To this day, even with advanced dementia, my mother describes her own grandmother as “a witch, the most evil person I ever met.” It goes on and on.

Healing My Inner Child

I finally understand that I have a family tree evergreen with trauma, the root of all my physical and psychological illness.

The second theme Kathy put forth is that to release my trauma we have to heal my “inner child.” I now understand that even as a fetus I took in the negative chemicals and vibe of my mother’s nightmarish situation – and it’s my inner child who’s carrying the greatest injury. The work is tricky because to reach her, we must maneuver around the many protective, life-preserving mechanisms she’s used for 60 years.

With Kathy’s guidance via Zoom, I’m slowly making friends with my inner child. While I want to protect her from the knowledge of a tragic future, ultimately I have to be vulnerable enough to let her spill the repressed memories of violence and dysfunction that host the lion’s share of our trauma.

My hope is that by healing my inner child I can end the cycle of excruciating harm I endure when I think about my family’s countless trespasses. If I can get to a strong landing point of understanding and release, my depression will turn to just sadness – and from there I can move on with better wellness.  

I want to be free.        

No matter the outcome, Mom was on to something. Thankfully, I’ve cracked the family code by asking why and doing the hard work. As Kathy reminds me, I choose “to think, not drink” - and because I don’t maintain the dysfunctional status quo, I’ve “jumped out of a sinking ship.”

All this time I thought my life had been upended by pain, but I now realize it was family trauma that caused every ounce of my misfortunate.    

This insight lovingly brings me to my aunt Grace who, by breaking the family trauma cycle, saved my mother. While I never met her, I see Grace as an angel and forever feel a deep connection, so much so I named my work for her goodness.

We’ve always been compared, and I now see that our similarity extends beyond looks and personality. A quote I continue to hear in my research about generational trauma is “The first born daughter often carries what remains unresolved in the mother.”

Grace and I were the eldest daughters and gave everything to save our broken families, an impossible task.

GRACE HAeRING

It cost my dear aunt her life – and I think she’s proud watching me fight for mine.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

The Impact of Chronic Pain on Family

By David Hanscom, MD, PNN Columnist

I have long asked the spouses and partners of my chronic pain patients to participate in the “Direct Your Own Care” project — my step-by-step method that allows patients to take control of their treatment plan.

One reason is that partners of chronic pain patients also experience suffering. They have their own broken dreams, disappointments and often just feel bad -- because their partner is feeling bad. This is not primarily psychological. The human brain has “mirror neurons” that are stimulated by others’ behavior. If one partner is having a bad day, there is a good chance that the other’s day is not going to be great, either.

So, when the patient’s partner is snippy, critical or hostile, the patient tends to feel worse, too. The region of the brain that elicits a bad mood is stimulated. Conversely, if one partner is in a great mood, the other tends to be happier.

That is why— indirectly for my patients’ sake and directly for that of their partners — I believe it is vital that both partners learn tools such as expressive writing and adding more play into their lives to restore a joyful life.

Unfortunately, it is often remarkably difficult to convince other members of the household to engage in these tools. If you care for your family member, why would you not try to do as much as possible to help him or her heal?

I ran across a study in the journal Pain that partially explains why. Researchers had 105 patients with chronic back pain and their spouses keep an electronic diary for two weeks on their interaction with each other. Spouses were asked to observe and record the patient’s pain behavior (such as complaining or grimacing), while patients were asked about any criticism or hostility they received from their spouse.   

The following observations were made:

• Patient’s pain increased for over three hours when they felt hostility or were criticized

• Patient’s pain behavior consistently created a negative reaction from their partner

• These interactions were consistent. The conclusion was that long-term negative interactions not only cause more pain, they erode relationships and quality of life

This finding is similar to what has been found in depression research. Depressed patients act in ways that cause rejection from others, which in turn exacerbates the depression.

There is no question that chronic pain is a family issue. The couples’ study doesn’t even take into account the damage an angry person in chronic pain can inflict on his close relationships. The family unit can become a living hell and seem like a hopeless situation.

Fortunately, like the patient’s condition, the family dynamic can get better with the right tools. It did with me.

Anger and Relationships

In addition to stimulating the nervous systems of those close to you through the mirror neuron effect, there are additional problems created by chronic pain in the household. Most of them stem from the understandable problem that when someone is trapped by pain, he or she is chronically angry and upset. Members of the family become targets in many ways. 

First, there is often a lot of complaining about the pain, medical care and the frequent mistreatment that patients in pain experience. We have found that many, if not most patients in pain, discuss their problems daily. Family members become worn-down by this, but the patient usually doesn’t understand the depth of their despair. Although the family is concerned and upset that their loved one is suffering, they are frustrated by their inability to help. In medicine, the term we use for this is “compassion fatigue.”

Secondly, peace, love and joy are crushed and replaced with an angry energy. Family members are often targets of sharp orders and criticism. The patient may demand that their physical needs be met by the family. At the same time, the person in pain may emotionally withdraw and become isolated even while being in the middle of a lot of bustling activity. Family life just isn’t as much fun.

Third, the essence of successful relationships is being aware of the needs of those around you. This is true in any arena, but especially critical in the family. Lack of awareness is the essence of abuse and anger is the ultimate manifestation of it. You can’t see the needs of others because you are blinded by your own angry energy.

So, instead of the home being a place of safety, it can become dangerous. When a family member is triggered by an angry patient and becomes hostile or critical, then the patient becomes more upset and it all becomes like a giant ping-pong game. This the opposite of what you would want, where a happy person creates the opposite contagious reaction. And where is the end point?

Since anxiety and anger are unconscious survival reactions that are much stronger than the conscious brain, they aren’t subject to rational control. How many of us have ever solved a disagreement in the middle of an argument? It never happens.

Healing Energy

We have discovered that family dynamics are such a powerful force in keeping people in pain, that medical interventions may have a limited effect. Conversely, we have also found out that the family can be a remarkably healing energy for everyone involved – and it happens quickly.

The path to this healing energy is the topic for another article. But the starting point goes like this:

The first thing I ask is that every adult family member living at home immerse themselves in the healing process. That means actively engaging in the exercises that calm down the nervous system. You can see them outlined on my website.

Second, I tell patients never to discuss their pain – ever -- except with their medical team. Talking about pain reinforces the pain circuits and is frustrating to those who care about you, but can’t help. I also tell patients that they can’t complain about anything.

Third, I want the family to reminisce about the most enjoyable times in their relationships. What were the fun times? Discuss them in detail and stick with the conversation. Try to feel it.

The final and most challenging step is not bringing the pain home with you. I tell patients, “When you walk through the door, you’ll make a commitment to never bring pain back into the house.”

The intention is not to ignore pain or pretend it doesn’t exist, but to create a safe haven in your living space. I want patients to take the positive energy generated by the conversation about the best times in their relationship into the home and keep it there.

If you have to argue or fight – take it outside. Every person in the household has the right to relax and feel safe in the confines of their home.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Chronic Pain Changes Family Dynamics

By Lana Barhum, Columnist

Chronic pain can have a strong impact on the relationships we have with our families. Most of us are glad and appreciative when we have families that help us get through some really tough days and make life more enjoyable. Unfortunately, for many pain sufferers the support of family is lacking.

Chronic pain can make you angry, moody and intolerant.  As a result, we sometimes take our frustrations out on those closest to us.  Sometimes we just want to be left alone and our loved ones, even though they have good intentions, won’t leave us alone.  Further, we can feel guilty for what we put our family through and try to make up for it, often feeling like we fall short.

As a single mother who lives with chronic pain, I feel like I fall short sometimes when it comes to being there for my boys.  I hurt on most days, but on the days where the pain is tolerable, I do everything I can to be there for them. On days when the pain is bad, I just want to be left alone.  I feel guilty my boys don’t have the mother I “think” they need and deserve.

Some days, I tell them I am hurting and pray they forgive me for being irritable, tired and wanting to be left alone. Other days, I feel like a version of myself I can’t be proud of.

It might be something different that gives you guilt and makes you feel like you fall short.  Perhaps you don’t speak up about your pain because you are afraid to be a “complainer.” Maybe you have spoken out, and felt your family wasn’t supportive. Or maybe your family reached out and you just prefer not to be a burden them.

Family Roles Change

Many people with chronic pain feel their families do not understand or believe their pain.  I, too, have felt that way.  This is upsetting because chronic pain is invisible.  It changes from day-to-day and there is no way to prove the extent of it or how to get others to believe it. 

The person who is physically hurting may start taking on a dependent status, which can lead to depression and feelings of helplessness.  Another family member may start to handle the majority of the family responsibilities and start to feel resentful. 

All these factors -- alone and combined -- cause stress on even the best relationships, leading to arguments, conflicts, isolation, withdrawal and discord in the family structure.

Chronic Pain and Marriage

Chronic pain is the worst on couples. Studies show relationships where one partner has health issues are more likely to end compared to those where health is not an issue.

A 2014 study from the University of Michigan looked at 20 years of data on over 2,700 married couples and found that 75% of the marriages in which a spouse had a long-term health problems ended in divorce. Divorce was even more common when the wife got sick. 

The partner in pain isn’t the only one struggling.  In fact, according to the Caregiver Action Network, spouses who become caregivers are six times more likely to become depressed.

It is difficult to adapt when your spouse or partner develops a health condition or gets injured, resulting in permanent pain.  After all, everyday life has changed and so has the future you planned together. Both partners have to make adjustments, which can lead to fear and anxiety.  Healthy spouses can also try to shield themselves from the reality of chronic illness, adding further stress and strain to the relationship.

My Experience

I wish I could share some good advice and personal experiences on how to make family relationships work despite chronic pain. But I can only commiserate.

I was diagnosed with rheumatoid arthritis and fibromyalgia in 2008, and everything went downhill from there.  My marriage didn’t survive chronic illness.  My family didn’t understand and they still don’t. I have been depressed – even suicidal.   I have struggled in more ways than I am willing to admit.

Dealing with lack of support from the people who are supposed to be there for you isn’t easy by any means.  I have been fortunate because I made many new friends since have being diagnosed, who understand my struggles and who have been there for me when I couldn’t rely on family. 

And even when people bailed on me, I learned to support and hold myself up.  I got help from a professional in dealing with my depression and learned to cope with the many challenges chronic illness and pain brought into my life.  I take better care of myself because I need to be there for my boys, and I remind myself daily these experiences make me stronger, wiser and better, with or without family support.  

The Take Away

All families face obstacles, but some just aren’t strong enough to bear the fallout from chronic pain and illness.   The extent of family disruption depends on the seriousness of the pain and illness, as well as the parties involved. In some cases, major health issues bring families together. For others, even the simplest challenges tear families apart.

The fact is, families take work.  And we always have two choices.  We either keep trying or we give up.  Sadly, too many give up.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Changes in Family Dynamics

By Barby Ingle, Columnist

Chronic pain can be a lifelong situation that has a significant impact not only on the patient, but on family and friends as well. The condition may affect every aspect of the patient's life in varying degrees, including professional, social, and daily living activities. Everyone may have to make adjustments.

After health, patients are usually hit hardest by the financial aspects of the chronic disorder. Frequently, a leave of absence or early retirement from work is needed due to the inability to perform work-related tasks. Financial difficulties are acerbated by frequent visits to healthcare providers, medical-related expenses and unemployment.

To help reduce stress for everyone, it may be smart for the patient and their family to meet with a financial planner or insurance agent and devise a budget for future expenses.

With less money and mobility, there’s a tendency to give up favorite activities like hiking, sports, traveling, and participating in family events. Exercise becomes more difficult and everyday activities such as driving and shopping may need to be modified or given up.

Despite a wide range of treatment options available, a patient with chronic pain may not seek help and dismiss efforts by others.

Some reasons for this include fears of:

• Addiction to medications
• Lack of insurance coverage
• Not understanding insurance coverage
• Belief that nothing can help them
• Recurring pain will be worse
• Being seen as a "complainer"
• Side effects from treatments
• Tolerance to medications

It is important to discuss these concerns with family members, friends, physicians, or support service professionals (psychologist, social worker, etc.) in order to take advantage of options that are available and may actually lead to pain relief and improvement in the overall quality of life.

Planning is a key component to keeping stress levels down and a great way for family and friends to learn how they can help. Having the patient map out a plan of action for daily routines and responsibilities allows everyone to know when and where their help is needed and minimizes unexpected mishaps. Responsibilities that may need to be addressed include carpools, housework, cooking, holiday activities, laundry, leisure activities, jobs, pet care, planning meals, self-care, and shopping.

Pain patients should be encouraged to stay active, join a support group or seek psychological counseling if appropriate. Some patients find benefit in getting involved in volunteer work, which allows them to set their own hours and to feel they can contribute to others instead of just focusing on their own condition. Patients also be able counsel others with chronic pain.

Caregivers and friends can encourage the patient to do well and get treatments they are comfortable with. Find the balance between encouragement and pressure so the patient knows you love them and that no matter what they choose you will accept it.                                             

It can be difficult (or impossible) to imagine that someone can be in constant severe pain.  It's normal if you have not lived through it yourself. For a caregiver, it may be hard to stand by and accept that your loved one’s pain cannot be fixed or cured (although it may be eased). 

It may also be hard to accept that you cannot make it better. If you are in a close relationship with someone in chronic pain, you are likely to develop a variety of negative feelings like anger or resentment. This is a normal part of the process for both you and the loved one in pain. You are both victims of the pain problem.

Learn how to set the expectation as soon as you can as to what your needs are as a patient or caregiver, what progression the chronic illness is expected to take, what treatment options are available, and the best ways to communicate with each other what will make life easier for the patient, family and caregivers.

Turning to family and friends as caregivers and support outlets is important for everyone to have better daily living.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation.

More information about Barby can be found by clicking here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.