Tag Archives: chronic illness

A counselor’s journey to healing from chronic pain

By Douglas Guiffrida July 8, 2020

From 2005-2007, I suffered from excruciating back and leg pain. My pain was so bad that I was unable to sit for nearly a year. The only time I would sit was to drive myself to work, and the pain during that drive was so intense that there were several times I had to crawl out of my car once I arrived.

An MRI revealed a herniated disc, so I began a series of medical interventions that included seeing two chiropractors (a second after the first failed to help), two different types of physical therapists with two different approaches, and an acupuncturist, and receiving three cortisone shots, to name just a few of my treatments. Although I occasionally experienced relief, it never lasted long, and my pain got worse. I reluctantly decided to undergo back surgery.

To help deal with my pain as I awaited surgery, I began exploring nontraditional approaches and came across a book by Dr. John Sarno called Healing Back Pain: The Mind-Body Connection. In the book, Sarno, a physician, outlined a radical approach to curing back pain that he had developed through observing his own chronic pain patients for decades. He theorized that pain such as mine was caused not by structural abnormalities or injuries but rather by oxygen deprivation and faulty neuropathways in the brain. Furthermore, Sarno argued that the brain can actually create physical pain as a means of protecting people from experiencing painful emotions such as anger, rage and guilt. He labeled this condition tension myositis syndrome (TMS).  

Learning about my pain

This isn’t to suggest that chronic pain is not real or is “all in your head.” On the contrary, Sarno believed that TMS pain was real and could be excruciating. However, because chronic pain is often not caused by structural abnormalities, Sarno argued, it could not be cured by focusing solely on the body. In other words, surgery, manipulations, injections, stretches and so on cannot cure the pain because the pain originates in the mind, not the body. Even for me, a licensed mental health counselor, this theory sounded crazy at first. After all, I had an MRI that proved I had a bulging disk.

At the same time, there was also something that resonated with me about Sarno’s ideas. First, he described how people with TMS tended to have shifting pain that could manifest in different ways and move to other areas of the body. This could include experiencing migraines, heartburn and other digestive issues, knee and shoulder pain, and so on. These were all things I had suffered from since I was a child, but none was occurring now that I had back pain.

Second, Sarno outlined how people with TMS often experienced more severe pain under times of stress and how that pain could diminish during less stressful times. This was certainly true for me. At the time, I was working very hard to earn tenure as a professor at the University of Rochester, and my wife and I were raising two small children. It was among the most stressful times in my life. I also noticed that my pain would sometimes subside during less stressful times such as vacations.

Third, Sarno outlined a series of personality characteristics that are consistent with people who suffer from TMS. Not only do TMS patients tend to ignore their own emotional reactions, but they are incredibly hard on themselves (i.e., they are perfectionistic, highly driven, tend not to seek out help, etc.). These personality characteristics fit me perfectly. Furthermore, Sarno argued that an MRI would reveal structural abnormality in almost all patients over the age of 30 — but most people don’t experience any pain as a result. In other words, if Sarno was to be believed, my herniated disk wasn’t the cause of my pain; rather, it was my personality.

I decided that Sarno’s approach was worth a try, so I delayed back surgery, stopped physical therapy and seeing chiropractors, and began working on my emotions. I found a therapist who worked from a psychoanalytic approach designed to help clients uncover repressed emotions, and I began therapy. I also began engaging in psychoeducation, behavioral interventions and mindfulness (which I will describe in more detail later).

Miraculously, after just a few weeks of practicing this integrative mind-body intervention, I was free of pain. Not only was I able to avoid back surgery, but I was able to heal a number of other chronic health issues with which I had suffered for years. To this day, my back remains pain free, and I am able to engage in physical activity without any restrictions.

In 2017, I began advanced training and research in mind-body therapies, and later that year, I opened a private practice focused on helping clients who are in chronic pain. Since then, I have helped dozens of people overcome a variety of chronic pain conditions, including back, neck, shoulder, knee and hip pain; fibromyalgia; migraines; and chronic nerve pain. Like me, most of my clients suffered for years and were not able to find cures from mainstream medical approaches. Several of them were on disability from work or school but have now resumed normal life activities.

In this article, I provide an overview of the mind-body counseling approach I use with clients who are in chronic pain and provide suggestions to counselors interested in integrating this approach into their work.

Integrating a mind-body approach

When I began my own healing journey, few resources about this intervention existed beyond Sarno’s books. Thankfully, things have changed. The advent of social media has allowed the hundreds of people healed by Sarno to share their stories (many presented in the documentary All the Rage), and a growing body of research now supports the efficacy of Sarno’s ideas.

This increased awareness and popularity have led to numerous options for professional counselors to receive additional training in this modality. Although I highly recommend that counselors pursue this additional training through workshops and clinical supervision, many of the mind-body counseling interventions are consistent with skills that counselors already possess.

To begin, counselors must carefully screen clients to ensure they are appropriate for the intervention. Most importantly, clients must be screened by their physicians for serious medical conditions such as cancer, heart disease or broken bones that require medical attention and cannot be cured by mind-body counseling. Second, as with all counseling interventions, the mind-body approach is most helpful to those who believe in it, are familiar with the process, and are committed. While most clients arrive with some skepticism (like I did), those who are completely closed to the idea (e.g., clients who attend only to appease someone else) are not likely to be helped and can often become frustrated with the process. In addition to posting information about my approach on my website, I also conduct extensive phone consultations with prospective clients to explain the approach in detail and assess their potential fit.

Once clients are screened, several counseling interventions can be used in ways that effectively integrate Sarno’s strategies. These interventions include:

  • Psychoeducation about the nature of chronic pain
  • Behavioral techniques to build confidence and reduce fear
  • Mindfulness to help clients become more comfortable with uncomfortable physical and emotional sensations
  • Intensive short-term dynamic psychotherapy (ISTDP) to allow clients to become aware of and express painful emotions
  • Social support from other mind-body clients

Psychoeducation

The first step in integrating this mind-body approach to healing chronic pain is to provide clients with psychoeducation regarding the relationship between their minds and their pain. In addition to Sarno’s books, a number of other recent books by mind-body experts such as Howard Schubiner, Allan Abbass, Nicole Sachs, David Clark, Steve Ozanich and spine surgeon David Hanscom review scientific evidence that supports and extends Sarno’s ideas about mind-body connections to many forms of chronic pain. These resources expose clients to research that shows:

1) Most people with healthy (i.e., pain-free) backs, knees, shoulders and hips show structural abnormalities that should cause pain, supporting the notion that human bodies naturally change with age in ways that look structurally problematic but do not cause pain.

2) There are relationships between childhood trauma and physical health, including many forms of chronic pain.

3) fMRI research has established links in neuropathways responsible for physical and emotional pain.

4) There are strong relationships between chronic pain and the inability to be aware of, experience and express painful emotions such as anger and guilt.

Familiarizing clients with research showing that their pain is not likely of a structural origin, which is contrary to what they have been told by other health care providers, and providing them a path for recovery can instill hope and reduce fear. This process alone can begin to reverse the fear-pain-fear cycle that can activate and reinforce pain neuropathways in the brain. 

Behavioral therapy

At the same time clients are learning about mind-body connections to chronic pain, counselors should also begin engaging them in behaviorist interventions designed to reduce fear and encourage reengagement in their normal activities. Well-meaning health care providers frequently instruct people with chronic pain to discontinue physical activities that they enjoy in order to allow their bodies to heal. This is great advice for injuries such as broken bones or sprained ligaments but extremely problematic for mind-body ailments. Several health care professionals told me to swim laps instead of playing basketball. After several weeks of swimming (which I hated), a chiropractor then told me that swimming was the worst thing I could do for my back because of all the twisting and bending involved. He instructed me to disengage from all activity. In reality, the less activity I engaged in, the more depressed and hopeless I felt, and the worse my pain became.

As clients become educated about mind-body connections to their pain, they are encouraged to gently reengage in physical activity without fear of harm the next day. Counselors can facilitate this process by encouraging clients to engage in daily affirmations to reduce their fears of physical activity. This could include declarative statements such as “I am strong, and my body is capable of engaging in this activity” or “There is nothing structurally wrong with me, so doing this can’t hurt me.”

Clients should also be instructed to chart their progress as they reengage in life activities. Often, clients can become discouraged and feel hopeless when minor setbacks occur. Logs that indicate their overall progress over time can help clients sustain optimism during these setbacks.

Counselors should also encourage clients with chronic pain to engage in somatic tracking. These clients often arrive at counseling having already devoted extensive time to seeking potential relationships between their pain levels and physical activities (e.g., exercise, household chores) or the foods they eat. This process can become incredibly frustrating because many of the activities or foods they once associated with their pain often are disproved over time. Counselors integrating this mind-body approach should instead encourage clients to document relationships between their physical pain and their emotional states. 

A very common example is that people suffering from chronic pain can experience reductions in pain during less stressful times in their lives such as vacations. Traditional structural models of pain often seek to correlate these improvements to things such as nice weather, changing humidity levels or even the quality of the mattress at the hotel. However, counselors operating from a mind-body approach should encourage clients to document their emotional states when feeling free from pain. This same process is used when pain increases.

For example, pain that went away during vacation often returns or becomes even worse when the client returns home. It is tempting to attribute this increase in pain to uncomfortable travel conditions (e.g., car or airplane seats) or weather changes. However, clients should be encouraged instead to explore problematic interpersonal issues to which they may be returning at home. Sometimes these answers can be very clear; other times, the answers are hidden from view, especially when they involve traumatic events or emotions that clients feel guilty about having toward others. In these cases, ISTDP is central in uncovering hidden emotions related to pain flare-ups.

Counselors can also help clients consider, without judgment or fear, the secondary gain that their pain potentially provides them, particularly regarding what their pain gets them out of doing or feeling. Chronic pain often requires people to become confined to their homes and, therefore, to miss out on potentially stressful interpersonal encounters. These can include social events that they may be dreading, conflicts with colleagues or family members, or even having to provide care for children, partners or aging parents.

Understandably, clients are often resistant to exploring these possible relationships because it may feel like they are being blamed for their pain or accused of it all being in their heads. Counselors need to continually reassure their clients that mind-body pain is real and not “created” on purpose. In fact, it is often a result of people trying to subconsciously protect others from their feelings toward them.

Counselors should encourage clients to create logs of what they miss out on during severe pain flare-ups. This may reveal correlations between their pain and their hidden (but potentially powerful) feelings of fear, anger and guilt. Sometimes, the patterns that emerge, although difficult to recognize initially, can become too prevailing for clients to ignore. Once these patterns are identified, ISTDP can be particularly useful in assisting clients with unpacking and understanding the complex relationships between their pain and their hidden emotions toward others.

Mindfulness-based therapy

Mindfulness-based stress reduction, first introduced into Western medicine by Jon Kabat-Zinn, has been used for over 30 years to treat chronic pain. While research indicates that mindfulness shows only moderate effects in alleviating chronic physical pain, the approach has proved highly effective in improving psychological symptoms associated with chronic pain, such as depression and anxiety, and reducing physical limitations associated with the pain.

From my experience, mindfulness is also extremely useful in helping clients become more comfortable with uncomfortable emotions. This can greatly enhance the effectiveness of the behavioral approaches mentioned previously as well as emotional-focused therapies such as ISTDP.

A detailed description of mindfulness is beyond the scope of this article. Counselors interested in effectively implementing this mind-body approach should seek training in mindfulness and mindfulness-based therapy. However, even counselors without training in mindfulness can encourage their clients to participate in mindfulness workshops and to develop regular mindfulness practices outside of their counseling sessions.

ISTDP

While Sarno argued that many people could heal themselves through psychoeducation and behavioral approaches alone, he also realized that some people (like me) needed psychotherapy to assist them with recognizing, experiencing and expressing repressed painful emotions that might be causing pain. Specifically, Sarno advocated that people with chronic pain engage in ISTDP, which is an attachment-based, emotion-focused somatic therapy developed by psychiatrist Habib Davanloo.

Through extensive research over several decades, Davanloo identified a series of core defenses some people have developed, often since childhood, to block uncomfortable feelings and repress traumatic experiences. While these defenses can often be adaptive when people are children, Davanloo found that they create tremendous emotional and physical suffering later in life.

Chronic pain, from an ISTDP perspective, is an unconscious attempt to protect (or distract) people from experiencing uncomfortable emotions and harmful impulses toward others, particularly loved ones, as well as the guilt they carry for harboring these negative feelings and impulses. Counselors conducting ISTDP therapy help clients notice strategies (or defenses) that they have developed to prevent themselves from becoming close to others and experiencing emotions toward them. Counselors also integrate experiential techniques that help clients become aware of, experience and express these painful, repressed emotions toward others and to recognize and even act out potentially threatening impulses associated with these painful feelings.

This process of skillfully pressuring and challenging client defenses can result in what Davanloo referred to as an “unlocking” of repressed emotions, where defenses are loosened and waves of painful feelings are experienced consciously. When partially or fully experienced in therapy, an unlocking can result in dramatic improvements in both physical and psychological well-being.

ISTDP is a complex and powerful approach to therapy that requires years of supervised training to implement. Even after completing extensive reading on ISTDP, attending numerous conferences and workshops, and participating for several years in a core training group and individual supervision with an expert ISTDP practitioner, I still feel like a novice. Even so, leading mind-body physicians such as Sarno and Schubiner have suggested that all health care professionals, including those without formal training in ISTDP, should integrate aspects of this approach into their mind-body practice. Specifically, they advocate for people in chronic pain to journal about their feelings toward others and to engage in meditations designed to help them connect their emotions to their bodies.

More information about ISTDP, including how to integrate elements of the approach into health care practice, can be found in Abbass and Schubiner’s book Hidden From View: A Clinician’s Guide to Psychophysiologic Disorders.

Social support

When I began this process as a client 15 years ago, I remember feeling very alone in my journey. The few attempts I made to discuss these ideas with health care providers, or even friends and family members, were usually met with skeptical or condescending looks and remarks. Now, having counseled many others, I have learned the power of social support in the success of this process. A consistent comment I hear from clients in my pain groups is how integral the support they receive from their fellow group members is to their success.

Engaging in pain groups may not be possible for everyone, but a number of online communities are available through Facebook and other social media platforms that can provide opportunities for clients with chronic pain to connect with others like them. There are also several podcasts, including The Mind and Fitness Podcast, hosted by former chronic pain sufferers who share their own and others’ success stories overcoming various forms of chronic pain through the mind-body process. These stories usually detail their struggles with chronic pain; their frustrations with health care professionals who performed costly and unnecessary tests and medical procedures; their mind-body healing journeys, including how they overcame setbacks; and their quality of life since becoming free of chronic pain.

Such connections provide clients not only with role models, but with continual support from others. This can enhance the effectiveness of the intervention, especially during times of struggle. There is even an app called Curable that is specifically designed to provide people in chronic pain with resources, activities and social support in ways consistent with Sarno’s approach.

Summary and conclusions

The integrative mind-body approach outlined in this article is a powerful and underutilized approach to helping clients heal from chronic pain. The approach is particularly well suited to clients who have been cleared of serious health conditions and who have exhausted traditional medical interventions with no relief.

While many of the intervention strategies align well with traditional counseling approaches, counselors who are interested in specializing in this work should engage in professional development by attending mind-body trainings and workshops and participating in an ISTDP core training group. Among the ISTDP master clinicians who offer core training are Allan Abbass, Patricia Coughlin, Marvin Skorman and Jon Frederickson. Counselors may also consider enrolling in the University of Rochester’s advanced certificate program in mind-body healing and wellness (see tinyurl.com/Mind-BodyCert). It is the first program of its kind to provide advanced-level training in this type of mind-body intervention.

 

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Douglas Guiffrida is professor, counseling program director, and director of the mind-body healing and wellness program at the Warner Graduate School of Education and Human Development at the University of Rochester. He is a licensed mental health counselor and a national certified counselor. To learn about his private practice or to contact him, visit DouglasGuiffrida.com.

Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

From pain to empowerment: Lessons learned through physical therapy

By Jane E. Buckingham July 20, 2019

A number of years ago, I gradually and almost imperceptibly began to have lower back problems. Eventually, simple daily activities caused me great pain: lifting a grocery bag, taking a casserole out of the oven, rolling over in bed, getting out of a chair, vacuuming the house (that last one I didn’t really care about). I had to give up things I loved, such as swimming laps and working in my garden. The more my back hurt, the less I did.

As it turns out, that’s one of the worse things you can do in situations like mine, but I didn’t know that at the time. I had been through an extreme amount of stress not long before my back started acting up. As anyone who has a health condition (ranging from a cold to cancer) can attest, friends, family and even perfect strangers feel free to provide you with unsolicited diagnoses and treatment suggestions. So, people kept telling me that my condition was stress related, emotional. I think there may have been some truth to that, but I also knew deep down that there was a structural element that needed to be addressed.

Eventually I got X-rays, which showed that I had not only long-term scoliosis but also erosion at the sites of a couple discs and some arthritic changes in my spine. I didn’t want to relegate my existence to painkillers or a reduced quality of life, so I accepted a referral for physical therapy. I was fortunate to find a wonderful practitioner to whom I returned again and again in the years that followed for a variety of issues — not only my lower back but also an injured shoulder, a knee problem and an unstable cervical area in my neck.

Upon conducting the initial assessment of my back situation, my physical therapist announced, “Jane, you have no core!” She meant physically, not psychologically, but nonetheless the pronouncement sounded dire, so I really took her words to heart. And, indeed, I had been using my back muscles inappropriately because no one had ever explained to me how to strengthen core muscles and why it was important to do so. To this day, I still do most of the exercises my physical therapist taught me as a way to manage my back condition, and I have resumed all the activities I was unable to do previously, including (unfortunately) vacuuming.

So, why this essay about what I learned from physical therapy? Because I believe the lessons and approaches presented in the PT model of conducting therapy, albeit in the physical realm, apply in very concrete ways to our work as professional counselors. Here are my takeaways.

 

Assessment

  • A thorough initial assessment sets the frame for successful treatment. In physical therapy, there was paperwork but not too much. A good portion of the evaluation was my own self-report, along with some objective measurements and observations on the part of the therapist. The preassessment consisted not only of rating my level of pain but also a functional analysis of my ability to perform tasks of daily living. This set the stage for an accurate post-treatment assessment.
  • In terms of diagnosis, instability can be just as concerning as outright pain, but it doesn’t get as much attention. We often hope that those initial warning signs, whether physical or emotional, will go away. However, stabilizing a condition before it becomes painful can help avoid serious problems down the line.

 

Goals

  • In my various experiences with physical therapy, the goals of our work together were very clear and established by me during that first intake session, thus creating a contract for therapy. Usually, one or two goals were sufficient and were completely measurable. Sometimes a goal was merely to reduce (not eliminate) pain and to regain my ability to engage in a particular activity again. My physical therapist estimated the number of sessions I would need, so the work had a beginning and an end, but it always included an invitation to return for a consult if needed.

 

Relationship

  • Trust is essential and was developed through the therapist’s active listening and sincere invitation to provide her with feedback. She had the expertise but understood that I was the expert on myself. Encouragement and honesty went hand in hand. If something wasn’t helping, we decided together to regroup and start fresh. I never really liked anything that involved props such as big rubber balls or elastic bands. She didn’t judge me for this but instead worked with my preferences.
  • My physical therapist was not just a good listener but also genuinely wanted to know how I was doing. In my most recent round of physical therapy for a neck condition, I wasn’t experiencing the results that either of us would have liked. I was feeling discouraged and frustrated that I wasn’t making progress. No problem. She instructed me to forget all the exercises I’d been given so far so that we could start all over at the beginning. We began anew with a different approach and set of practices, and they worked. It’s important to note that, to switch gears like this, total honesty on my part was essential, but it was her nondefensive response that allowed us to find a more effective approach.

Action

  • A little goes a long way. We started very slowly. Each week my physical therapist introduced one or two exercises that I was to practice in between sessions. In fact, my participation and practice outside the sessions were where the real work happened (just like in psychotherapy). The requirements and expectations were so minimal — most exercises involved only 10-15 repetitions one or two times a day — that it was easy to do them, and this led to a sense of accomplishment. My therapist gave me handouts with written instructions and diagrams so that I could refer back to them if needed. I came to understand that when humans are confronted with change on a big scale (even if the change is something we invite into our lives), the organism can set up resistances in both subtle and significant ways. When change is small and gradual, the protective functions of the amygdala don’t get activated, and barriers to change don’t have a chance to develop.
  • Visualization was a primary tool for the physical therapist. When she asked me to locate and tighten muscles I didn’t even know I had, she used imagery and mental practice to get me started. “Just see yourself in your mind’s eye doing the exercise.” “Imagine guy wires attached to your abdomen pulling the muscles tight.” “Bend from the waist, keeping your back straight, like a waiter taking a bow.” “Press your feet to the floor as if trying to keep an egg from rolling away without breaking it.” “Try this with a light touch, like kitten whiskers.”

 

Outcome

  • The results of physical therapy were not instantaneous, but changes became evident in a few short weeks. Stabilization came first, and then strengthening. Small gains were encouraging and kept me motivated. Armed with a menu of exercises to practice on my own, I felt resourced with an increased sense of agency. Slowing down and paying attention with mindfulness became solidified as tools that were readily available (these tools were also transferable to other life situations).
  • If something can’t be cured, at least it can be managed, functioning can be restored, and quality of life can be enjoyed. I felt empowered to continue the maintenance work on my own but also encouraged to come back if past problems resurfaced or new ones arose later on.

 

Final thoughts

Each of the concepts and suggestions I incorporated from physical therapy can be applied to our work in mental health counseling. Some of them are common sense, whereas others reflect what is established as best practice. But organizing them into a frame that is parallel to physical therapy provides a different portal into our therapeutic work.

I have used all of these ideas with clients and found them to be useful. My back continues to be stable, and I have discovered that I do have a core after all.

 

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This essay is dedicated to BB with gratitude.

 

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Jane E. Buckingham is a licensed clinical mental health counselor, national certified counselor, certified clinical mental health counselor and mental health consultant in Brattleboro, Vermont. Contact her at janebuckingham@yahoo.com.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

Facilitating support groups for caregivers

By Brooke B. Collison July 8, 2019

The 40 million adults in the U.S. identified as caregivers often find themselves overwhelmed, lonely and depressed. They provide care on a part-time or full-time basis for individuals — usually family members — who, because of health or other reasons, need assistance with activities of daily living. Facilitated groups can provide a nonjudgmental framework for caregivers to find understanding and support from others who are in similar situations. Support groups can be self-sustaining, but they function best when a professional counselor or trained facilitator assists group members with their processing.

A gentle but convincing nudge from my spouse started my volunteer work as the facilitator of a caregiver support group six years ago. I continue to serve caregivers in that role today. My experience as a facilitator has allowed me to make a contribution in my retirement, and I encourage other counselors to explore the same possibility.

Enormous variability exists in caregiving situations, but common among them are conditions that are of high concern in aging populations: dementia, Alzheimer’s disease, chronic illness and other age-related deterioration. The three individuals my wife pointed out to me in church that Sunday morning had become full-time caregivers of spouses with Alzheimer’s disease. My spouse said to me, “They need a group. You should do something.”

The first group started with a direct invitation from me: “Would you like to get together with some other caregivers to have a place to talk?” I was met with quick affirmative responses from two of the three people I approached, and they were soon joined by a few others who heard something was beginning. Over time, the group grew to a dozen members, with some joining and some leaving as caregiving situations changed.

Nine deaths of care receivers occurred during the first three years before the caregivers decided to dissolve the group, having worked through the stresses and strains of caregiving, as well as the agonies and life-change issues of death. Among the caregivers in that first group were spouses, adult children, relatives of care receivers, and an employee of a care center. Although the medical and physical issues of care receivers were varied, the issues of being a caregiver seemed universal.

The support group was probably therapeutic, but it was not therapy. Although I have been a licensed counselor, I was the facilitator for the group, not the therapist. People entered the group voluntarily, and there was no contract that described my behaviors, philosophy or approach. I had retired as a counselor educator and did not renew my counseling license. So, I would clarify to new members that my role was to facilitate the discussions in the group. I also stated that I had no expertise in any of the medical issues being experienced by the care receivers. I explained that, as the facilitator, I would help manage the discussion, ask questions to clarify issues and, if I felt it necessary, remind members of the few general ground rules they had established for themselves: Treat personal situations and conversations with respect, don’t dominate, listen, and accept another person’s feelings and emotions as legitimate.

I do have a philosophy about support groups. I believe that most of these groups can develop to a point where they can manage their own issues and in-group communication. However, I saw part of my role as being somewhat protective of vulnerabilities among group members. If a member expressed strong feelings that might be contrary to the beliefs of another member, I would monitor critical responses. For example, if a caregiver expressed anger at a spouse or partner — “He makes me so mad when he …” — I would listen for the “You shouldn’t feel that way” response. This seldom happened, but when caregivers are living by the “in sickness and in health” vow they took at the beginning of their marriages, they can have a set of values that discourage anger toward or criticism of a spouse.

My belief is that the primary value of caregiver support groups is to provide a place where caregivers can give voice to stressful experiences, strong feelings and personal frustrations in the company of others who, ideally, give verbal and head-nod agreement with the issue rather than criticism or value-laden responses that only make these difficult feelings intensify. In short, caregiver support groups should provide what most people in the caregiver’s larger circle cannot give — authentic empathic understanding.

There have been times during the life of caregiver groups when I moved from the role of facilitator to member. I became a caregiver when my spouse broke her hip when we were traveling out of state, resulting in surgery and several months of recovery. At one session, I moved from “my spot” in the circle to a different chair and announced, “I’m a member today, not the facilitator.”

I proceeded to share an experience in which I had become quite upset over a huge mix-up in communication with my spouse that had left each of us very angry with the other. At the time, I saw our inability to clearly communicate — both in sending clear statements and in not understanding statements — as a scary image of what our future might become as we grew older. The communication mix-up, which became funny in time and with perspective, loomed at the time as a grim picture of a possible future. Members of the support group heard my story, shared their similar concerns, and accepted my worries. When I shared the same episode with other friends, it drew none of the same empathic understanding.

In a second major block of time in the same support group, I became more member than facilitator after my spouse was diagnosed with an untreatable brain cancer and lived only three more months. I remained in the group as a member, and another person took up the facilitator role very effectively.

Several kinds of support groups can be found in most communities. I prefer a noncurricular support group. In these groups, discussion topics emerge from the issues that caregivers bring to the sessions rather than from a predetermined agenda. Many support groups, especially those established for a fixed number of sessions, operate from a curricular base — sometimes even with a textbook — and have specific topics identified for each session. Other support groups may become more instructional in format. I believe the noncurricular support group provides the best opportunity for members to talk about the critical concerns and issues they have in the caregiver role and to find the greatest empathic understanding among a small group of people who share somewhat similar life situations.

Caregiver issues

In the caregiver support groups I have facilitated, members have raised a broad range of issues, including:

  • Loneliness
  • Depression
  • Role reversal
  • Becoming an advocate for the care receiver’s medical and social needs
  • Preparing for the care receiver’s death
  • Money/estate issues
  • Sexuality
  • Respite
  • Handling inappropriate questions and responses from others
  • Lack of patience
  • Anger
  • Relationship changes
  • Asking for, accepting, giving and refusing help
  • Decision-making for self and others
  • Concerns for their own health
  • Conflict with parents/siblings
  • Change in social supports
  • Moving the care receiver to a care facility and being an advocate for
    them there

I will comment on a few of these issues more specifically to demonstrate the value of a noncurricular caregiver support group.

Loneliness characterizes the lives of most caregivers to a certain degree and becomes extreme for some. Becoming a caregiver means that a person’s world changes. Day-to-day employment, recreational and social activities no longer exist for that person in the same way. In cases in which the care receiver’s dementia or other cognitive dysfunction begins to increase, the caregiver discovers that the person, although still physically present, begins to disappear. Loneliness becomes a way of life, as the years of sharing spirited discussions each morning over newspapers and coffee turn into coffee and silence. It isn’t uncommon in a support group to hear someone say, “She’s/He’s just not there.” The support group becomes a loneliness antidote for many members.

Depression is another common topic in caregiver support groups. More than a third of long-term caregivers experience depression, according to surveys reported by AARP. Caregivers might not use the word “depression” as they talk, but the behaviors and emotions they discuss often reflect that condition. In several group sessions, after a member has talked about depressed status, I have heard other members respond along the following lines: “I was feeling that way after my wife was at home for two months, and my physician labeled it as depression. I’m still on a prescription for antidepressants, and I think it’s perfectly OK to be on the pill.”

Role reversal happens in some fashion for nearly all caregivers who have had a long relationship with the care receiver. Couples who have been together for years and have fallen into clear divisions of responsibility around money management, food preparation, driving, decision-making and other tasks will discover that either physical or mental limitations force role changes. For example, the partner who never wrote a check finds that checks, credit cards, bills, tax preparation and all other money matters now fall under their domain. The person’s reaction to this can be either positive or negative. Being the fiscal manager may give the partner feelings of responsibility and control that they have not had before, or it can be experienced as an overwhelming burden that leaves the person feeling totally incompetent. Discussion of the effects of role reversals can be quite revealing to self and to others. If one partner who seldom drove the car because the other partner was extremely critical is now forced to become the driver — only to discover that the criticism from the nondriving care receiver only increases — relationship stress will multiply.

Lack of patience has been voiced by nearly every caregiver with whom I have had a group experience. As the person they care for starts to slow down physically or as their daily living abilities begin to disappear, caregivers see their daily load increasing, leaving them with less and less time to manage everything that needs to be done. Caregivers will often say their lack of patience is mixed with anger, even when they know it takes the care receiver longer to do nearly everything or that tasks and functions are forgotten or items misplaced. “It now takes 45 minutes to get from the house to the car, and I can feel my anger increasing with every minute. It makes us late for every appointment, and I have to start earlier and earlier for everything we do.” This statement brought unanimous head-nod agreement from an entire group. The discussion shifted to the resulting feelings of anger and loss, then moved into individual strategies for handling impatience and increased time requirements.

Becoming an advocate is a role that some people relish and others avoid. Caregivers are generally thrust into the role of patient advocate with the medical system, the care facility complex, and their surrounding social system in general. Frequent support group discussions have begun with a member telling their story of the previous week’s battle with some element of the complex that serves their care receiver. Sometimes these stories are ones of frustration, feelings of helplessness and lack of needed information. At other times, the story might emerge as a powerful feeling of accomplishment: “Yesterday, I met with the administrator of the assisted-living facility and demanded more attention to medication schedules.” These are moments for groups to celebrate, especially when caregivers who describe themselves as hesitant to challenge authority relate successful actions on behalf of their care receiver. Sometimes, when a discouraging episode has been shared, other members have related to the same issue or provided inside information gleaned from their own trying times. Some have even volunteered to accompany the caregiver to the next appointment.

Respite is labeled by experts as one of the most essential elements of caregiver health. As a topic in a support group, discussions frequently focus on how time away, or relief or respite care, would be appreciated. Simultaneously, caregivers will talk about how respite or any form of time away is impossible. This is frequently tied to the personal belief that the caregiver is the only person who can or should fulfill the task of giving care.

Help becomes a common discussion topic in one of several forms: Where do I get help? How do I ask for help? How do I turn down help? Embedded in many of these discussions are personal core values about what giving or receiving help really means. It is one of those topics where it would be easy for a facilitator to slip over into a therapist role. When caregivers describe how it is essential that they be the one who does everything and how impossible it is for them to accept help with any of their caregiver duties, the natural tendency of the trained therapist is to probe or confront or interpret in order to explore parental and other messages about help. It is also one of those situations in which group members may step in with their own illustrations of what help means, where their core values about help came from, and how their beliefs about help either facilitate or inhibit their functioning as caregivers. In staying away from my therapist tendencies to remain a facilitator, there are times when I can smile later and say to myself, “The group is doing what a good group does; they don’t need me to be the therapist.”

Information needs are high when someone first takes on the caregiver role. In early stages, they may be bombarded with pamphlets from their physician about specific diseases, friends may tell them about books to read, and technologically informed caregivers may search the web for sources. New caregivers are often directed to information support groups; medical facilities may offer groups for individuals with similarly named conditions. I find these groups helpful during the early information-gathering times, but their helpfulness diminishes when the caregiver gets deeper into the caregiving experience and discovers that information is important but not enough. It is more valuable for the caregiver to have a place where they can say, “My life is slipping away, and I don’t know what my future will be,” with six or seven people nodding in agreement. Then one of them says, “Yes, some days I don’t have anything that resembles my life before.”

Other issues common in support groups include concerns about money because long-term illness is expensive. If other family members are involved, conflict with siblings or other relatives is inevitably a cause of stress for the caregiver. Sexuality is usually discussed in the group relative to hygiene and physical care by others, but on more than one occasion, caregivers have dug in to issues of appropriate and inappropriate sexual behavior in care facilities. In a support group, caregivers may find an environment where they can talk about impending death, even anticipating relief when it comes. Often, caregivers will agonize over the decision to place their loved one in a care facility, then have additional agony with second thoughts and regret after the decision has been made, even though the decision will be described as “the right thing to do.”

Support group procedures

I believe the best way to create a caregiver support group is by invitation. Within any group of older people, it is likely that some will be serving as caregivers. Over time, that number will increase. (AARP provides good summaries of this trend at its website, aarp.org; the organization’s reports and resources are easily accessible by typing “caregiver” in the search field.) Posting announcements of a caregiver support group will attract a few people, but many people are reluctant to attend without a direct invitation.

Support groups function best when there are enough people present for good discussion but not so many as to restrict individual participation. My ideal numbers range from eight to 12 participants. I have worked with both larger and smaller groups that seemed effective, however.

Groups have a beginning and an end and can be announced as such. The open-ended entry and exit group can go on for years; facilitators need to be clear about what they are agreeing to do when they begin a group with no clear end. Ending a group and then resuming later with the same members can be effective. This can also serve to ease the transition of new members in and old members out if they choose to leave. I strongly encourage some kind of summary or ceremony when group members depart. Likewise, I urge groups that decide to end to develop a concluding summary and ceremony.

Caregiver groups, by the very nature of what brings people to the group, will morph into grief groups. In my experience, people generally wish to remain with their caregiver group rather than shift to a separate grief recovery group because of the close relationships they have formed and the comfort that comes from being with people who know their story. As group membership begins to reflect more people whose care receiver has died, it does make it more difficult for new members to join.

Volunteer versus paid facilitation is an issue for many counselors. My participation is as a volunteer. In my community, support groups exist that are tied to medical or service agencies in which the facilitator might be a paid employee. There might be instances in which insurance would cover the cost of an ongoing support group, but this is not as likely for an open-ended group as it is for a fixed-length program.

Counselors in private practice could offer support groups for which members would compensate the facilitator. Under those circumstances, members could enter the group in the same way they would enter counseling sessions — with a contractual understanding of the role of the counselor who is operating with a prescribed set of ethics and an appropriate license.

I believe it is important for group facilitators to have a person they can go to regularly to discuss issues that arise for them in the facilitation role. In the same way that we expect counselors to have clinical supervision, facilitators need to seek this support. I get this through occasional coffee sessions with a friend who is a clinician.

I urge counselors to find or to create support groups that make use of the facilitation skills that counselors possess. Caregivers in their communities will be the beneficiaries. The service meets a critical need, and the satisfaction that facilitators will experience is beyond measure.

 

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I’d like to thank Bob Lewis and all the other caregivers over the years who have taught me what I know about support groups. I appreciate the stories and feelings they have shared and for the support they have given each other in such meaningful ways.

 

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Brooke B. Collison is an emeritus professor of counselor education at Oregon State University. He is a fellow and a past president of the American Counseling Association. For the past several years, he has served as a facilitator for caregiver support groups as a volunteer activity in his retirement. Contact him at BBCollison@comcast.net.

 

 

Letters to the editor: ct@counseling.org

Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Counseling Connoisseur: Revisiting the Spoon Theory

By Cheryl Fisher July 1, 2019

“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio

 

Tara, 36, wakes up and rolls out of bed. Her pain factor is a five out of 10. She feels well rested after spending the past two days in bed–the result of working an 8-hour day and going to dinner with friends. Today she will try to finish her laundry and run errands. The lupus flare-up appears to have subsided–for now.

Kevin, 28, a graduate student, is not as fortunate. He struggles to keep up with the demands of a full-time job and graduate school. Kevin has weeks when he is able to manage both. However, today, he has become physically and emotionally paralyzed by his autoimmune disorder and struggles to bring even his thoughts together. He is contemplating taking an academic leave of absence until his health improves.

Carmen, 57, has been living with multiple sclerosis (MS) for over 20 years. Each day she wakes up and takes inventory of her physical and emotional well-being. Some days are better than others. However, the uncertainty of her health has prompted her to seize the moment and engage fully in her craft as an author.

For Tara, Kevin, Carmen, and thousands of others, the challenge of managing their chronic conditions while also meeting the demands of daily life can be daunting. To those around them, they look perfectly healthy. Smart and ambitious, they excel when they are feeling well. However, without warning they can be thrust into the throes of physical, emotional and cognitive dysfunction, rendering them unable to get out of bed, let alone handle professional, academic or personal responsibilities and obligations.

The Spoon Theory Revisited

In an attempt to help her dear friend understand what living with lupus feels like, writer and activist Christine Miserandino crafted The Spoon Theory to explain how energy is limited by chronic illness. Miserandino uses spoons as a metaphor for energy. According to the theory, a person has a certain number of spoons representing energy each day, and each activity depletes a portion of those spoons. In this way, individuals are encouraged to ration and pace their spoon/energy usage in order to accomplish their daily activities. This theory has become widely accepted, and some individuals have even coined the name “Spoonies” for those with conditions that restrict energy. However, the Spoon Theory relies on myths about chronic illness and energy.

Myth 1: There is a set number of spoons each day.

The amount of energy (spoons) needed to function is not prescribed in a daily dose. Clients may wake up and feel that they are armed with a picnic basket filled with spoons. Then a few hours later, they crash and burn and are entirely depleted of whatever resources they thought they had. It is as if the bottom fell out of the basket without warning.

As Jennie, a blogger for The Mighty, an online support community for people facing health challenges, describes in her post, “Why the spoon theory doesn’t fit my life,” what seems like a high energy day can suddenly turn into total depletion:

“Often I wake in a morning and think, ‘Yes! Today is a good day!’ Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change; sometimes it’s stress. Often I have no clue whatsoever what happened.”

Myth 2: Spoons can be banked for another day

The Spoon Theory suggests that rest will help bank energy for the next day. This sounds like it makes sense, right? However, chronic illness doesn’t play fair. Resting for a day or two may result in feeling even more fatigued the following day. This makes it difficult to plan activities for the day, week or month. For example, my own daughter, who was recently diagnosed with lupus, confided that some days she wakes up feeling energized only to crash within hours and be wholly depleted the remainder of the day or even the next few days. It is frustrating to both the person who has the illness and those around them who may want to make plans. At times, life is only manageable in chunks of minutes versus days.

Myth 3: Activities require a specific number of spoons

One of the challenges of the Spoon Theory is that it is impossible to quantify (in spoons) the amount of energy it takes to accomplish any given activity. The amount of energy expended is influenced by other variables, including pain threshold. For example, getting dressed for the day may be as easy as slipping into an outfit one day, but feel like donning a suit of armor the next. So, although the activity for both days is identical, the depletion of energy is vastly different. Therefore, preparing for energy expenditure can feel like a futile effort.

 

How counselors can help

Living with the day-to-day uncertainties of a chronic illness can be isolating, alienating and frustrating. Making plans with friends and family must be spontaneous and depends on the illness effects du jour. Counselors can assist clients and families who are impacted by chronic illness by validating their experiences, providing psychoeducation, and stepping up to advocate on local, regional and national levels.

Validate

By nature, counselors are exceptional listeners who are able to hear and identify the concerns of the client. Additionally, we can validate the challenges experienced by the client. Clients may feel anger and resentment at how their condition may restrict activities. They may feel isolated and alone. Friends and family who were present at the initial diagnosis may have returned to their busy lives. This often may leave the client feeling abandoned and alienated. Validating the difficulties of navigating chronic illness allows the client to feel heard and understood.

Educate

While we are able to sit with the client and the emotional, cognitive and physical pain of chronic illness, we can also provide psychoeducation that may promote strategies for better self-care. For example, helping clients grieve the old lifestyle and create a new normal that is shame-free and includes strength-based coping skills that allow them to deploy greater flexibility in the face of those “not-so-great days.”

Counselors can also help clients locate resources in the community, such as support groups or career assistance. They can provide education to family and friends about the uncertainty of living with chronic conditions that tax energy. For example, helping significant others understand that staying in bed all day is not indicative of a character flaw or laziness but a real depletion of energy (those spoons again!).

Advocate

Counselors can contribute to efforts for institutional changes that will benefit clients by participating in legislation and signing petitions. We can attend hearings and provide testimony to the needs of our clients. Finally, counselors can use their voice and power to advocate for clients by participating in any number of activities to increase awareness or fund research.

Conclusion

The Spoon Theory attempts to explain the energy consumed by chronic illness. In reality, it oversimplifies the complexity of day-to-day functioning. Perhaps one of the gifts of counseling is to provide a relationship without conditions where the client is valued beyond the constraints of the illness and a place that welcomes vulnerability and recognizes the courage of showing up each day in spite of the challenges. Perhaps the act of counseling is — as Brené Brown suggests — joining the client in the “arena” and experiencing their pain and disappointment. Perhaps even in the complexity and uncertainty of living with chronic pain and illness, the counselor can help clients recognize that showing up each day if worth the challenges.

Finally, perhaps in the midst of the discomfort of the seeming betrayal of the body and mind, the best gift counselors offer to their clients is as author Hannah Brencher says in her book,  If You Find This Letter: My Journey to Find Purpose Through Hundreds of Letters to Strangers, “… the permission to feel safe in their own skin. To feel worthy. To feel like they are enough.”

 

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Related reading, from the Counseling Today archives:

The tangible effects of invisible illness

Assessing depression in those who are chronically ill

 

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Cheryl Fisher

Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. She is director and assistant professor for Alliant International University California School of Professional Psychology’s online MA in Clinical Counseling.  Her research interests include examining sexuality and spirituality in young women with advanced breast cancer; nature-informed therapy; and geek therapy. She may be contacted at cyfisherphd@gmail.com.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

Supporting clients through the anxiety and exhaustion of food allergies

By Bethany Bray November 27, 2018

The diagnosis of a food allergy is life-changing, not just for the individual but for those who love and live with that person. In addition to avoiding exposure to certain foods, the condition requires that these families and individuals explain, over and over again, the seriousness of the allergy at schools, restaurants, social gatherings, workplaces, daycare facilities and countless other places.

It can all be exhausting, says Tamara Hubbard, a licensed clinical professional counselor whose son was diagnosed with a peanut allergy six years ago. Families receiving a new allergy diagnosis face steep learning curves that can cause them to worry and to overthink every detail of what their child or other loved one eats or might be exposed to.

“It’s almost like Russian roulette. You don’t know when an [allergic] reaction will happen, even when you take precautions,” Hubbard explains. “There’s a constant level of fear and anxiety at all times in the background that parents and caregivers need help managing.”

Food allergies affect an estimated 4 to 6 percent of children in the United States, according to the U.S. Centers for Disease Control and Prevention. Between 1997 and 2007, food allergies increased 18 percent among American children and adolescents younger than 18.

A food allergy reaction sends someone in the United States to the emergency room every three minutes, reports the nonprofit organization Food Allergy Research & Education (FARE).

Counselors can help clients work through the anxiety and other mental health issues that food allergies sometimes exacerbate, but they can also be a source of support simply by serving as a listening ear. Clients may come to a counselor’s office worn out from the self-advocacy and constant vigilance that a food allergy requires, explains Hubbard, who has a private practice in the suburbs of Chicago that specializes in supporting clients (and their families) with food allergies.

With food allergies, there is sometimes “a constant feeling of having to fight in every conversation to get your point across,” she says. “Just being an empathic, listening ear [as a counselor] and wanting to learn, that makes a huge difference in their anxiety level and ability to release tension.”

At the same time, counselors should research and learn about food allergies to become a competent support to clients, Hubbard emphasizes. For example, they should know that an intolerance or sensitivity to a food is very different from a diagnosed allergy.

With a food allergy, the immune system views the allergen — for example, wheat, shellfish or peanuts — as an invader and overreacts whenever it enters the body. Someone who ingests a food that he or she has an intolerance or sensitivity to will experience discomfort but not the potentially life-threatening reaction that comes with an allergy, Hubbard explains.

Counselors who understand the biological and mental health implications of food allergies can help these clients to live fuller lives, Hubbard says. Although the most important thing counselors can do is learn about and understand food allergies, exercising compassion is also essential, she says.

“Sometimes, even medical professionals aren’t good at that part. They send [people] off with an EpiPen and say, ‘Come back in six months.’ In a perfect world, they would send them off with a list of resources for mental health and wellness,” says Hubbard, an American Counseling Association member. “Counselors can play a very important part to fill in that gap, even if it’s just an empathic ear. That is incredibly therapeutic in itself.”

 

Tempering the uncertainty

The anxiety that families and individuals with food allergies often experience is more complex than simply worrying about possible exposure to an allergen, Hubbard says. Anxiety can spike over everything from sending a child to school and worrying that the staff won’t follow allergy-safe protocols to second-guessing whether a food product might contain nuts, even when the label says it doesn’t.

In the United States, companies are required to note on food labeling whether a product contains one or more of the eight most common allergens. These potential allergens are:

  • Milk/dairy
  • Eggs
  • Fin fish (e.g., salmon, flounder, cod)
  • Shellfish (e.g., crab, lobster, shrimp)
  • Tree nuts (e.g., almonds, walnuts, pecans)
  • Peanuts
  • Wheat
  • Soybeans

However, U.S. companies are not required to disclose whether a product is made in a facility or on equipment that is or was exposed to those eight allergens, Hubbard notes.

With that in mind, navigating grocery stores, restaurants and social gatherings involving food can be anxiety-provoking for those with food allergies — and especially for newly diagnosed families, Hubbard says. Some parents react by restricting their child’s activity to reduce the risk of exposure.

Allergy diagnoses are sometimes given after a person has experienced one initial anaphylactic reaction. This can create uncertainty concerning how much of the allergen is too much. For example, is it OK to be near someone else who is eating the food to which the person is allergic?

“There is fear of the unknown: ‘How much of the allergen will it take for my child to react?’ There are different layers to the anxiety, and it’s important [for counselors] to understand each layer,” Hubbard says. “Also, the anxiety affects each member of the family; they will all feel it. There’s a lot to unpack when you are assessing a client who is dealing with food allergies.”

Counselors who understand the complexity of the issue can help clients find balance and equip them with tools to manage the anxiety, Hubbard notes.

“Ultimately, the goal is to help the client — whether it’s the allergic person themselves or a caregiver — assess the risk for every situation they’re going to be in. Is their anxiety based on fact or emotion? We can tell ourselves that everything is unsafe, or we can navigate [the risk] and take precautions,” she says.

 

Finding balance

There is a balance between living in fear and frustration because of food allergies and still enjoying a good quality of life, Hubbard stresses. “Understand that in many cases, when someone is newly diagnosed, especially if it’s a young child, the person or family may be very overwhelmed initially,” she says, “as there can be a steep learning curve when your lifestyle needs to suddenly change due to a food allergy diagnosis. Some people navigate this well, while others need support and guidance. I typically encourage people to remember that it will take time to get used to the diagnosis and gain all of the necessary knowledge to live a well-balanced life between food allergy fears and empowerment. I also encourage those who are newly diagnosed to learn the basics at first and, over time, as they feel ready, branch out to other related food allergy topics, such as potential treatments, research and advocacy.”

Here are some tips for counselors to keep in mind related to food allergies:

> Prepare for an emotional roller-coaster: Food allergies can be life-threatening, so it’s understandable when individuals (or their families) experience strong emotions such as fear, sadness, anger or guilt connected to the diagnosis. Of course, these emotions can eventually lead to becoming overwhelmed or burning out, Hubbard says.

“If a child has a [allergic] reaction, the parents can feel strong emotions of ‘what did I do wrong?’ At the same time, they could have done everything 100 percent right,” Hubbard says. “The reality is that it’s a big deal, but that doesn’t mean it has to be a … crisis every day.”

Equipping clients with coping mechanisms will not only help them manage their own anxiety and strong emotions but will also keep them from transferring those feelings to the child or family member with the allergy, Hubbard says.

Counselors can also help clients work through their feelings of loss concerning what their life (or their child’s life) might have been like without the limitations of a food allergy. For example, they may yearn to eat at a restaurant without having to ask about the establishment’s allergy protocols or to eat lunch with friends in the school cafeteria instead of sitting at a separate table or worrying about what foods they could be exposed to.

“These children [with food allergies] have to grow up a little quicker in some respects. They have to learn to speak up for themselves and make decisions,” Hubbard says. “It’s about managing the feelings and finding ways to help them empower themselves and advocate to come through with some balance.”

> Move toward acceptance: One of the most important things counselors can do is help clients reach acceptance of the food allergy diagnosis, Hubbard says. This can have similarities to grief work, including helping clients come to terms with the fact that they can’t change the situation, she explains. Narrative therapy can assist clients in reframing their feelings and taking control of their story.

Role-play can be beneficial for clients of all ages because it helps them learn to navigate their feelings and the language they will need to use to advocate for themselves. (For example, how will they explain that they can’t eat the cake at an upcoming birthday party?) Hubbard says she also finds play therapy, mindfulness and cognitive behavior therapy helpful for clients with food allergies.

Above all, she says, counselors should make sure their approaches are tailored to and appropriate for the individual client. “For kids, it’s not appropriate to talk about the risk of death [involved with food allergies], but coping with their feelings and worry is appropriate,” she notes.

Counselors can also model acceptance for clients in session, Hubbard adds. It can be a relief to find that “they don’t have to walk into a session defending themselves,” she says. “They can learn that not every conversation has to be fight-or-flight. It’s a marathon, not a sprint, for sure, just as with any chronic illness. Help clients pace themselves.”

> Find the right words: An individual with food allergies (or the parents of a child with food allergies) will need to explain the allergy to everyone from school staff to well-meaning relatives who are hosting a holiday dinner. Be aware that there can be cultural and generational differences in levels of understanding and flexibility surrounding food allergies, Hubbard advises.

“This can be hard for people who aren’t comfortable speaking up. If they’re not a natural advocate, it will now fall to them to educate [others] and advocate,” she says. “A counselor can help them manage the feelings around that, [including] frustration, burnout and exhaustion.”

> Guide children (and parents) as they grow up: Parents may find themselves growing anxious as their child with food allergies ages, develops more independence and spends more time away from home. Counselors can offer support as these families navigate the child’s developmental milestones. This might include encouraging the family to gradually give the child more freedom and responsibility to make safe choices independently.

For example, teenagers who are beginning to date may have to inform their love interests that they shouldn’t kiss for a while after the person has eaten something containing an allergen. “For every phase of life, there will be an additional need to explain and educate [about the allergy], and that can be exhausting,” Hubbard says.

> Be aware that “relapses” are possible: Clients who have made progress on accepting a food allergy and managing the emotions that come with it can “go back to ground zero” anytime they experience an allergic reaction or exposure scare, Hubbard says. Counselors shouldn’t be disappointed if these clients sometimes backslide on the progress they have previously made in therapy.

> Work with the allergist: Professional counselors shouldn’t hesitate to contact a client’s allergist (if the client grants permission). Counselor practitioners can learn a lot about the specifics of a client’s needs from the allergist, Hubbard says. For example, some food allergies are milder, whereas others can cause a reaction even from airborne exposure (for example, peanut dust). “Each client will have a specific set of data [regarding his or allergy],” Hubbard explains. “It’s important to stay connected with their allergist and check in to help you better understand.”

> Be cognizant that allergy-related bullying does happen: Being aware of allergy-related bullying is especially important for counselors who work in school settings or with children and adolescents in their practice, Hubbard notes. Up to one-third of children with food allergies have faced bullying, according to FARE.

This can include overt bullying, such as taunting or threatening a classmate with an allergen. But allergy-related bullying can also come in less obvious forms, such as when an adult (teacher, sports coach, etc.) points out the individual with an allergy and labels them as the “reason” the class or team can’t have certain foods. This type of scenario can make individuals feel bad about their allergies and the inconveniences they may present, Hubbard says.

 

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The Food Allergy Counseling Professionals Networking Group

Started by Tamara Hubbard, this group is open to counselors who work with clients who are managing food allergies. Connect with them on Facebook: facebook.com/groups/FoodAllergyCounselingProfessionals/ to share resources and network with other professionals who specialize in this area.

 

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Contact Tamara Hubbard and find resources at her website: foodallergycounselor.com

Hubbard also writes a blog on allergy-related issues, including a series titled “Four things counselors should know about food allergies.”

 

 

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Related reading

Hubbard suggests the following resources for counselors or clients looking to learn more about food allergies and their connection to mental health:

 

 

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Bethany Bray is a staff writer and social media coordinator for Counseling Today. Contact her at bbray@counseling.org.

 

Follow Counseling Today on Twitter @ACA_CTonline and on Facebook at facebook.com/CounselingToday.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.