Tag Archives: chronic illness

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.

 

The counselor’s role in assessing and treating medical symptoms and diagnoses

By Jori A. Berger-Greenstein April 4, 2018

Take a moment to imagine the following scene, with you as the protagonist: A few days ago, you woke, went for a run, had breakfast and headed to work, where you attended a committee meeting. The next thing you remember is lying in a hospital bed and being told that you had a stroke. You seem unable to move or feel one of your legs.

You are in a double room with an elderly man who has had many relatives and friends visit, although he seems not to be doing well. You’re not sure, however, because you feel foggy. Is this a side effect of the medication they keep giving you?

You are dressed in a hospital johnny and confined to bed. A nurse checks your vital signs on the hour, often waking you when you’re sleeping. An intravenous tube in your arm is connected to a bag with some sort of liquid in it, and you are hooked up to monitors, although you’re uncertain of what they are monitoring. Beepers sound regularly, prompting the nurses to come check you, look at the monitors or change out the bag.

A doctor visits in the mornings, along with a group of medical students, reminding you of Grey’s Anatomy, complete with looks back and forth and eye-rolling. They talk among themselves as if you aren’t there, using medical jargon that you don’t understand. Your family members are anxious and tearful. You hear them talking to the doctor about transferring you to another facility because your insurance won’t continue to cover your stay in the hospital. You also hear your spouse on the phone with relatives who live across the country but want to come see you.

As the patient, how might you be feeling? What might you be thinking?

Now imagine that instead of being the patient, you are a mental health provider called in to assess the patient for depression. How might you respond?

The above scenario and others similar to it are commonplace for many providers who operate in the field of behavioral medicine, which the Society of Behavioral Medicine defines as the “interdisciplinary field concerned with the development and integration of behavioral, psychosocial and biomedical science knowledge and techniques relevant to the understanding of health and illness, and the application of this knowledge and these techniques to prevention, diagnosis, treatment and rehabilitation.”

As recognition of the psychological and behavioral factors involved in medical illness has increased, so has our ability as mental health counselors to serve a valuable function in patient care. Providers and researchers alike now recognize the importance of approaching health care more holistically rather than compartmentalizing medical versus psychological well-being.

Understanding context

Primary care providers, the first stop for most people’s health-related complaints, operate under ever-increasing pressures to provide care for more people in less time. The average visit lasts 10 to 15 minutes, with the goal of assessing presenting symptoms (typically while simultaneously entering patient information into a computer system) to ascertain their cause and thereby provide information about how to treat them. There often isn’t time to gather the context of these symptoms, increasing the likelihood that important details can be missed. Likewise, there isn’t sufficient time to fully discuss the pros and cons of treatment options, the potential barriers to treatment and whether a patient is willing or able to follow through on the treatment recommendations.

In contrast, mental health providers often have the luxury of coming to understand patients/clients more fully. This includes understanding and appreciating the contexts in which patients/clients find themselves, understanding how these individuals are coping and making meaning of what is happening, and forming a trusting relationship with them, which is consistently demonstrated to be predictive of adherence to care and improvements in health-related parameters.

As Thomas Sequist, assistant professor of health care policy at Harvard Medical School, stated in a New York Times article in 2008, “It isn’t that [medical] providers are doing different things for different patients, it’s that we’re doing the same thing for every patient and not accounting for individual needs.”

It can be said that medical providers are trained to identify and treat symptoms in order to identify disease so that a patient can be effectively treated — which is, in fact, their role. In contrast, mental health providers are trained to treat people and illness — illness being one’s experience of disease rather than just a compilation of symptoms or diagnostic labels.

The process of assessing for mental health symptoms

A variety of mental health conditions are characterized by symptoms that overlap with those attributable to medical conditions. For example, symptoms of an overactive or underactive thyroid mimic anxiety and depression, respectively. Psychosis can mimic neurological conditions, mood disorders can mimic endocrine disease, anxiety can mimic cardiac dysfunction and so on.

Through training mental health clinicians to identify symptoms that may indicate a medical cause and knowing how to assess for the possibility of a medical workup, we can make earlier referrals for medical care. This, in turn, helps us to identify diagnoses more quickly, leading to easier/more efficacious treatment and better validating concerns.

One’s cultural identity and the resonance of cultural norms are also important to assess and monitor. For instance, a patient may be reluctant to engage with an English-speaking provider, may have a vastly different conceptualization of illness as punishment (in stark contrast to the Westernized biopsychosocial model) and may need validation for his or her reliance on faith and spirituality.

Collaboration

Collaborating as mental health clinicians directly with medical professionals toward the common goal of helping those who need our care can be invaluable. Examples include ruling out mental health disorders, identifying appropriate treatments in the case of comorbidities, providing emotional support to patients who have been diagnosed with a medical disorder and supporting physicians who may be overwhelmed. For instance, medical treaters may not know or understand the presentation of symptoms associated with trauma or the intricacies of providing trauma-informed care.

Being knowledgeable as mental health clinicians about medical-related symptoms, the language and jargon of medicine, and strategies for navigating the medical system provides us with critical credibility. This credibility can make or break our ability to collaborate as mental health clinicians.

Providing care

At its best, behavioral medicine functions as a prevention-focused model with three levels of care:

1) Primary prevention refers to preventing a problem from emerging to begin with. Examples of this might be establishing obesity prevention programs in public schools for young children or working with high-risk families to promote safety practices. The idea is to work with groups that may be more vulnerable to risks at some point in the future and to prevent those outcomes from occurring.

2) Secondary prevention involves working with people who have developed a problem of some sort, with the goal of preventing it from worsening or becoming a larger problem. Examples include working with people who are prehypertensive in order to prevent hypertension and subsequent cardiovascular disease or stroke, and working with people with HIV to increase their adherence to antiretroviral medication to reduce viral load, making them less infectious to others and providing them with more healthy years of life.

3) Tertiary prevention refers to helping people manage an already-existing disease. This might involve increasing quality of life for people enduring a condition that won’t improve, such as a spinal cord injury, multiple sclerosis or late-stage renal disease, and supporting people in the later stages of a disease that is imminently terminal.

Transtheoretical model (stages of change)

Although mental health clinicians may be familiar with efficacious interventions for a given condition, we may not be perceived as credible if we do not understand and respect the client’s/patient’s motivation. No mental health provider’s repertoire is complete without an understanding of the transtheoretical model and how to utilize it to increase an individual’s motivation for positive change.

Assessing where a client/patient might be in the stages of this model (precontemplation, contemplation, preparation, action, maintenance) helps us to better target our interventions in a respectful way by taking context into consideration. Clients/patients in the precontemplation stage might benefit most from education and are less likely to be receptive to recommendations for lifestyle changes, whereas those in the action stage may not need as much of an emphasis on motivation. For a thorough description of the transtheoretical model, I would refer readers to William Miller and Stephen Rollnick’s seminal work, Motivational Interviewing: Helping People Change.

Concrete needs and specific skills

The majority of causes of death and disability in the United States are those caused or treated, at least in part, by behavior. Nationally, the top 10 causes of death, according to the Centers for Disease Control and Prevention (2015), include cardiovascular and cerebrovascular disease, cancer, pulmonary disease, unintentional injuries, diabetes, Alzheimer’s disease and suicide. Changes in lifestyle, knowledge/education and interpersonal support can be successfully utilized as part of all three levels of prevention. In fact, these are areas in which mental health providers can be extremely valuable.

Primary prevention: Data suggest that the single most preventable cause of death is tobacco use, which can dramatically increase the risk of developing cancer, pulmonary disease and cardiovascular disease. Comprehensive smoking-cessation programs can be quite effective in managing this, as can education to prevent young people from initiating cigarette use.

Sedentary behavior (and, to a lesser extent, lack of exercise) is also strongly associated with health problems, perhaps most commonly cardiovascular disease and cancer. Concrete strategies for introducing nonsedentary behaviors (using the stairs, standing up once an hour, walking) can be incorporated into one’s lifestyle with less effort than a complex exercise regimen.

Getting proper nutrition, practicing good dental hygiene and consistently wearing sunscreen, helmets and seat belts are other examples of primary prevention in behavioral medicine. Motivating people who have not (yet) experienced the negative consequences of their risk behaviors is an approach that mental health providers are trained to provide.

Secondary prevention: The rates of obesity have risen dramatically in the past decade and are associated with a wide variety of serious medical complications, including diabetes, cardiovascular disease, stroke and cancer. If treated effectively, the risk of such complications can be reduced significantly. Examples of interventions found to be useful include aerobic exercise, dietary change (such as adhering to a Mediterranean diet and managing portions) and monitoring weight loss.

Although the specifics of these interventions may be most appropriately prescribed by dietitians and physical therapists, mental health providers can add value by helping to increase clients’/patients’ motivation and adherence, providing more thorough education about recommendations and collaborating with other providers.

Tertiary prevention: Spinal cord injury, most often caused by motor vehicle accidents, falls or violence, can have a devastating effect on a person’s life. These injuries are not reversible, but mental health providers can prove valuable in tertiary prevention efforts. These efforts might involve providing existential support; helping patients to navigate the medical system and ask for/receive support from significant others; and identifying strategies for improving quality of life and accessing tangible resources to sustain some aspects of independence.

Getting started

So, how might clinical mental health counselors “break into” the system? The ideal is an integrated care model in which mental health providers are colocated within the medical setting. This serves a dual function of facilitating mental health referrals and making it easier for patients/clients to see us because we’re just down the hall or up a flight of stairs from the medical providers. It also ensures that we remain visible to medical providers and allows for us to easily demonstrate our value.

Short of this, and for those who are less interested in focused work in behavioral medicine, the following suggestions may be helpful:

1) Attend trainings. This is a crucial first step before mental health counselors can ethically market themselves as being knowledgeable about behavioral medicine. As an example, with rates of diabetes increasing, and associated adjustment and psychological sequelae common, learning all you can about the disease and strategies for managing it provides you with some expertise and a valuable referral option. This is consistent with current recommendations for branding a practice.

2) Develop a niche. Your services can be all the more compelling if you have developed a niche for yourself that fills a gap. Research your area and the specialties that mental health providers are marketing. Is there something missing? For instance, many providers may be offering care for people who are terminally ill, but are there providers specializing in working with young people in this situation? Are people who specialize in working with pediatric cancer also advertising services to treat siblings or affected parents?

3) Being mindful of your competence and expertise, connect with medical providers and let them know that you are accepting clients. For instance, if you work with children or adolescents, consider reaching out to pediatricians. Research consistently finds that the only linkage to care someone with mental illness may have is through his or her primary care physician. Providing these physicians with literature about your services makes it easy for them to pass along your information to anyone they think may benefit. Mental health counselors can connect with medical providers via personal visits to physicians’ offices or through direct marketing to professional organizations. Note that approaching small practices may be the better option because they are less likely to already be linked with another service (hospitals often have their own behavioral health clinics/providers).

4) Connect with specialty care providers. These providers tend to have greater need of mental health professionals who are familiar with a given diagnosis.

5) Don’t be afraid to contact a medical provider treating one of your clients. This can provide a means for collaborative care and could also serve to gain you credibility, while indicating that you are glad to take referrals. Clearly, this should be done only if clinically indicated and only with the client’s permission.

6) Finally, be prepared to describe your experience, training and competency areas in a brief fashion. In the busy world of medicine, time is quite valuable. Mental health providers’ skills in waxing poetic can get in the way of communicating the essence of what we want to get across.

Ethics

This article would be incomplete without a mention of ethics. Behavioral medicine is a field rife with ethical concerns. Perhaps the most salient of these is competence. From an ethical lens, it is critical that we, as mental health counselors, recognize the limits of our competencies — that is, we are not trained in medicine and thus cannot ethically diagnose a medical condition, recommend treatments that could be potentially harmful or assure patients/clients that medical evaluations or treatments are unnecessary. All of these actions require the input and monitoring of medical treaters, who can guide our efforts in care. Patients/clients also need to be clearly informed of both our benefits to and limitations in their care. The world of medicine changes rapidly, and the half-life of training in medicine and medical care is short. Ongoing education is critical.

Let’s return to the scenario described at the beginning of this article. The shared goal for all providers — medical, psychological and other — is to provide efficacious and meaningful care in a way that improves the patient’s health and quality of life. By utilizing our respective areas of training, competencies and strengths, we can better understand the context of symptoms, which can guide our care. This is the cornerstone of providing ethical care.

 

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

Jori A. Berger-Greenstein is an assistant professor at the Boston University School of Medicine and a faculty member in the mental health counseling and behavioral medicine program. She is an outpatient provider in adult behavioral health at Boston Medical Center, where she serves on the hospital’s clinical ethics committee. She also maintains a private practice. Contact her at jberger@bu.edu.

Letters to the editorct@counseling.org

 

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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.

Assessing depression in those who are chronically ill

By Cathy L. Pederson, Kathleen Gorman-Ezell and Greta Hochstetler Mayer March 7, 2018

You receive a referral for a new client from a local physician. Great! As you review the materials, it is clear that the physician thinks the client’s issues are “all in her head.” Perhaps she is depressed. A good strengths-based and ecologically grounded counselor is just what she needs.

On the day of the first appointment, you wonder about this 24-year-old woman. You make a quick assessment upon meeting. Diane is pale, thin and has bags under her eyes. She looks exhausted and almost fragile. Yet she is neatly dressed in jeans and a T-shirt, and her light brown hair is pulled into a ponytail. She is not wearing makeup and is naturally pretty. She has an easy smile and is quite pleasant.

As you begin your work with Diane, you realize that a number of her complaints sound like the somatization of depression. She clearly suffers from fatigue. She has also struggled with insomnia the past several months, adding to her exhaustion. Diane reports a decreased appetite and has lost 10 pounds in the past couple of months without effort. Furthermore, she suffers from neuropathic pain in her legs — a chronic pain condition from abnormalities in the sensory nerves that often results in constant pain that may feel like explosions, stings or burning aches. In addition, she frequently has abdominal pain and headaches.

Because of these symptoms, Diane was often absent at work and was subsequently fired. She now relies on her parents for financial support and has moved back home. Diane is clearly depressed … or is she?

Overlapping symptoms

Many people suffering from invisible illnesses such as chronic fatigue syndrome, myalgic encephalomyelitis, Ehlers-Danlos syndrome, fibromyalgia, Lyme disease, mast cell activation disorder, postural orthostatic tachycardia syndrome (POTS) and Sjögren’s syndrome are first diagnosed, often incorrectly, as suffering from depression. Although troubling, this is understandable because the symptoms for these chronic illnesses overlap with somatic complaints associated with depression.

Many people in the general population who are depressed suffer changes in appetite, sleep and weight, and have increased fatigue and pain. Among individuals in the chronic illness community, these are common symptoms related to their physical illness. They may also suffer from other symptoms that make gainful employment or social relationships difficult. These symptoms include brain fog that makes concentration and processing of information challenging, orthostatic intolerance (increased symptoms when standing), exercise intolerance, joint subluxations and dislocations, severe allergic reactions to foods or chemicals, hot flashes, and muscle and joint stiffness or pain.

Many current depression screening instruments have at least a third of their questions related to somatization of depression. This can artificially elevate the depression score in those individuals with a chronic, invisible illness because of the physical symptoms they experience.

For instance, consider the free version of the Beck Depression Inventory. The last seven questions of this popular instrument ask about physical, rather than psychological, changes. Thinking about those with chronic invisible illnesses, imagine their scores for the following somatization of depression items.

  • I can work about as well as before (0). … I can’t do any work at all (3).
  • I can sleep as well as usual (0). … I wake up several hours earlier than I used to and cannot get back to sleep (3).
  • I don’t get more tired than usual (0). … I am too tired to do anything (3).
  • My appetite is no worse than usual (0). … I have no appetite at all anymore (3).
  • I haven’t lost much weight, if any, lately (0). … I have lost more than 15 pounds (3).
  • I am no more worried about my health than usual (0). … I am so worried about my physical problems that I cannot think of anything else (3).
  • I have not noticed any recent change in my interest in sex (0). … I have lost interest in sex completely (3).

There are 21 questions total on the Beck Depression Inventory, each ranging in point value from 0 to 3, with the higher numbers reflecting an increased possibility of depression. For how many of the seven questions above do you think that Diane might report a 2 or a 3 because of her physical ailments? If she chose the most severe response (a score of 3) for each of these seven questions, this would give her 21 points — placing her in the category of moderate depression on the Beck Depression Inventory — without even considering the first 14 questions on the survey.

It is important to realize that some clients who might appear moderately, severely or extremely depressed on a screening instrument such as the Beck Depression Inventory are actually suffering from an undiagnosed physical illness. We urge counselors to explore these somatic symptoms with their clients, particularly if the counselor notices an imbalance in the affective versus somatic parts of the instrument. With an integrated conceptualization of the person within her or his environmental context, counselors can go beyond addressing surface symptomology to explore underlying concerns.

Taking time to build a therapeutic alliance is critical, especially as many in the health care industry feel pressure from insurance companies to conduct quick patient exams. Unfortunately, many health care practitioners don’t get reimbursed for really listening to their patients and probing these multifaceted issues to arrive at a correct diagnosis. As counselors, you have the opportunity to give your clients something that they have been lacking — someone who is willing to take the time to truly listen and piece together the complexity of their problems.

Chronic illness and depression can be comorbid

Just as someone with chronic illness may not have depression, comorbidity of depression with chronic illness is possible and must be ruled out. There is a known link between chronic medical illness and depression for people with heart disease, cancer and a variety of other well-understood medical issues. Approximately 50 percent of people with chronic invisible illnesses also suffer from clinical depression. The trick is to separate those individuals with elevations purely from physical symptoms from those individuals who are truly depressed. There is a paucity of literature to guide clinical practice in this area.

Chronic illness encompasses more than just the physical symptoms. Many clients/patients become socially isolated because they can’t work or go to school. Friends and family members may slowly drift away as the illness drags on for months, years or decades. In the case of invisible illnesses, these clients often look “normal,” so it is not uncommon for people to completely dismiss their affliction. Many of these disorders are not well-understood, and a stigma can be attached to them that adds shame and guilt for being ill.

Poor treatment from health care workers can compound the problem. Many people with these illnesses have perfectly normal blood and urine tests, electrocardiograms and MRIs. If the tests are normal, then the symptoms must be “all in the person’s head,” right? Can people truly be suffering when traditional testing can’t find the cause? Many individuals working in the health care professions would say no. As a result, many of these patients are labeled as being high maintenance, and their own physicians may not believe that they are truly ill. Even for those individuals with a chronic or invisible illness who are not depressed, counseling can be important to increase their hope, improve their quality of life, help them gain perspective and help them work through social issues as they learn to deal with their new reality.

Properly diagnosing clinical depression for people with chronic illnesses is important, just as it is in the general population. Interestingly, not all people in the chronic illness community who die by suicide are clinically depressed. Research has shown that individuals with chronic invisible illnesses, particularly women, are at an increased risk for suicide. Some studies have reported that nearly 50 percent of people with POTS or fibromyalgia report suicidal ideation. Among those with chronic fatigue syndrome and myalgic encephalomyelitis, approximately 20 percent are at high risk for suicide. These are staggering numbers.

Although most counselors routinely assess for suicide, it is important to know that individuals with chronic invisible illnesses often do not present with the same symptomatology. Whereas most people in the general population who are suicidal tend to have comorbid depression, people with chronic invisible illnesses may not present this way.

Suicide risk factors for individuals with chronic invisible illness include loneliness, perceived burdensomeness and thwarted belongingness. The acquired capability for lethal self-injury is a critical area of risk to explore for those with chronic invisible illness due to repeated exposure to painful or fearsome experiences. These risk factors should be routinely assessed and worked into the treatment plan to target the underlying suicidality and reasons for living. Determining specific goals and objectives on the treatment plan, as well as providing regular check-ins on these topics, may help to decrease the risk of suicide.

The individual’s support system, including the treating physician, should also be made aware of the link between these risk factors and suicide. By facilitating this conversation between clients who are chronically ill and their support systems, some of the concerns related to loneliness, perceived burdensomeness and thwarted belongingness may be addressed proactively and conversely serve as protective factors rather than risk factors.

Counseling clients who are chronically ill

Many individuals with chronic illnesses need a safe place to vent their frustrations while receiving validation for their emotional, social and physical suffering, even if they are not clinically depressed. You may be the only person who believes them as they explain their symptoms and how the chronic illness impacts their daily life.

The therapeutic relationship and the ability to establish rapport are imperative to initiating change in the treatment process. Individuals with chronic invisible illnesses may benefit from individual therapy, couples or family-based interventions, multidisciplinary case coordination and group therapy with other people who are chronically ill. Integrating teletherapy or online therapy can ensure that these individuals, particularly those who are partially or completely homebound, have access to the care that they need.

Some people with chronic invisible illnesses struggle to get through the day. Because of their physical struggles, they often miss activities that they enjoy and may feel disconnected from their social circles. Feelings of loneliness and isolation may develop. As their illness progresses, individuals may require more assistance to perform tasks of daily living (e.g., showering, cooking, cleaning, shopping), which can lead to feelings of burdensomeness. As counselors, it is important to help these individuals find strong support networks and to provide psychoeducational information to the significant people in their lives. It is also crucial to assure these clients that they are resilient and have inherent value that is untouched by their illness.

Many individuals with chronic invisible illness are accurately diagnosed later in life. This fact illustrates how the course of chronic illness can impact the developmental process and quality of life at different stages. The diagnosis and ensuing disability can alter many of these individuals’ plans for the future, including college, career, family life and, at times, independence. This may cause them to redefine themselves within the scope of their chronic illness. Often, they must develop new roles in school, at work and within their families and friendships as they live within the confines of their health issues. As a result, their self-esteem and identity may be negatively impacted and must be addressed within the therapeutic context at different points in time.

This may be done by challenging negative self-talk, focusing on intrinsic motivation and using techniques such as radical acceptance, acceptance and commitment therapy, mindfulness-based stress reduction and a strengths-based, ecological perspective. By focusing on these individuals’ strengths, counselors may empower them to create new roles that will provide joy while also embracing the changes in their physical abilities.

In addition to the physiological changes that they are experiencing, clients who are chronically ill may simultaneously be going through the grief process. It is important for counselors to work with these clients to acknowledge the reality of the loss of their physicality, address feelings associated with their loss and help them to adjust to a new “normal.” Magical thinking often accompanies the process of grief and loss and occurs when an individual creates an improbable theory or belief system (often self-deprecating) around why a loss might have occurred. This often serves as an initial defense mechanism but can become detrimental over time. As a result, it is important for counselors to work with chronically ill patients to challenge any magical thinking that may be in place.

Finding normalcy after loss takes time. It is important to remind those with chronic invisible illnesses that there will be good days and bad days, while simultaneously working with them to instill hope for the future. Counselors can play a valuable role in helping people with chronic invisible illnesses to accept their physical limitations, while also empowering them to live rewarding and fulfilling lives.

 

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Cathy L. Pederson holds a doctorate in physiology and neurobiology. She is a professor of biology at Wittenberg University and is the founder of Standing Up to POTS (standinguptopots.org). Contact her at cpederson@wittenberg.edu.

Kathleen Gorman-Ezell holds a doctorate in social work. She is a licensed social worker and an assistant professor of social work at Ohio Dominican University. Contact her at gorma111wnek@ohiodominican.edu.

Greta Hochstetler Mayer holds a doctorate in counselor education and is a licensed professional counselor. She is CEO and initiated suicide prevention coalitions for the Mental Health & Recovery Board of Clark, Greene and Madison Counties in Ohio. Contact her at greta@mhrb.org.

 

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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Related reading, from the Counseling Today archives: “The tangible effects of invisible illness” by Cathy L. Pederson and Greta Hochstetler Mayer

 

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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.