A positive counseling experience—one that steers a patient through the maze and haze of coping with a medically as yet unexplained, chronically debilitating illness has the potential to profoundly improve one's quality of life. But beneficial guidance requires having the effects on mind and body simultaneously recognized, followed by individualized therapeutic advice. This leads to better coping, less pain, and more optimized use of precious energy.
Conversely, a counseling experience with disbelieving or dismissive therapists, no matter how subtle their attitudes may be, increases stress and exacerbates symptoms—especially for people with a poorly understood illness like chronic fatigue syndrome (CFS).
Elly Brosius, facilitator of the Northern Virginia CFS/Fibromyalgia Support Group (NoVA), has years of experience learning to cope with her CFS and helping others to find supportive resources. Dr. Fred Friedberg is a psychologist, CFS researcher and assistant professor at the Applied Behavioral Medicine Institute at Stony Brook University in New York. Among other things, he teaches a class on managing medically unexplained illnesses. Here’s what this dedicated duo have to say about the challenges and benefits of finding appropriate counseling support.
What are the challenges to effective counseling for people with CFS?
From the desk of CFS patient and support group leader, Elly Brosius:
Counseling can be a challenging experience even when the counselor is supportive and the results are rewarding. Traveling to regular appointments, delving into inner feelings and even maintaining an hour of sustained focus can be tiring. But greater problems can arise as a result of counselors who aren't experienced with the specifics of CFS [and/or Fibromyalgia].
You're fatigued? Stop doing so much for others and care for yourself now.With CFS, Its its typical to have all of those feelings, yet impossible to follow all of that advice.
People with chronic illness usually need encouragement and support to do fewer activities. CFS leads to a substantial reduction of normal activity. Simply taking care of yourself and your home, handling a job or a mountain of disability-related appointments and forms and maintaining a few relationships is nearly impossible to accomplish within the energy that remains. Yet people with CFS regularly report receiving assignments from their counselors designed for people with near normal energy. The added activity burden of following such assignments actually exacerbate the symptoms of CFS.
Journal this, track that, do this relaxation or meditation ritual so often, for so long... it’s all potentially great advice. But a strong determinant in a patient's decision to continue working with a counselor––whether therapy introduces help or harm––is how a counselor handles a willing, even enthusiastic, client who literally cannot comply, or repeatedly relapses while trying. If a counselor responds to noncompliance with impatience or blame, implying the client has an interest in failing, the results can be disastrous for people already dealing with feelings of failure due to the physical and cognitive losses of associated with CFS. Moving on (literally, as in to another counselor) is an appropriate response to such disapproving “care.”
The immense grief surrounding the loss of one's health, job, future and relationships, and the anger generated by this aggravating illness and its state of medical mystery is only fully explored if these losses and CFS itself are acknowledged.
Countertransference, when professionals' emotions and beliefs interfere with patients being themselves, is also a real problem for those with severe unexplained illnesses. As a result, clients may avoid revealing socially unacceptable subjects and behaviors that need to be addressed to provide peace and resolution. when counselors are resistant to hearing the basic day to day realities of living with CFS. For example, a client may need to discuss conflicted feelings about bathing less frequently or choosing junk food over the real threat of starving when too tired to shop or prepare meals. If a counselor is resistant to understanding the basic, unpleasant realities of chronic disabling illness, it’s unlikely a client will feel safe enough to disclose these unsettling issues or delve into deeper feelings.
From the desk of CFS-experienced psychologist Dr. Fred Friedberg:
There are certain obstacles that can stand in the way of a counselor being equipped to deal effectively with patients struggling with CFS and other similar conditions.
Many, and probably most, behavioral health therapists (largely psychologists and social workers) are focused on the mental processes typically found in anxiety, depression, and adjustment problems. The complexities of mind/body interplay may exceed their training and understanding. For instance, sound treatment suggestions for volunteer work or normal exercise are often counterproductive in patients with CFS, with the potential to make their symptoms worse.
A puzzling illness like CFS has the added dimension of medical uncertainty. In the late 90s, I once gave a CFS seminar to 50 psychologists in San Francisco. When asked about their beliefs about the illness, half of the group raised their hands to agree that CFS is not a real illness. Even though they were there to learn about that very thing!
I teach a class on managing medically unexplained illnesses, focusing on CFS and fibromyalgia, to fourth year medical students. Likewise I teach workshops to mental health professionals about CFS and fibromyalgia. But this and other medical education efforts by motivated organization is just one piece of the solution. Medical and behavioral training for CFS, fibromyalgia and related illnesses must be developed and taught as a standard part of the educational curriculum for all health professionals.
How might I find an more accepting, knowledgeable counselor?
From Elly Brosius:
Tap into the vast experience of CFS and similar illness support groups in your area and online. Ask for counselor referrals when attending meetings or by talking with local support contacts. While collecting names, the people you'll encounter may likely have other relevant information and experience to share. New friendships founded on acceptance and empathy happen frequently in support groups.
Note that a support group, when implemented in a mature form,
meets similar goals as counseling: validation, accommodations
which work for various symptoms and situations, coping strategies,
and hope. A group cannot provide individuals with enough
personal attention nor can it group handle issues much
beyond the scope of the shared illness experience.
Also beware of support groups where discussion frequently turns
toward negativity. Studies show that this type of dynamic can
can actually hinder well-being, especially for the chronically ill.
Use national search engines including “Find a Therapist” at 4therapy.com which specifically offers search options for chronic fatigue, fibromyalgia, or chronic physical illness (www.4therapy.com).
Whatever search engine you use, be a little wary of results based on some form of “physical illness.” It may not mean that professional works well with medically unexplained or debilitating conditions. [See The Northern VA CFS/FMS Support Group's website for more therapist search engines. (Geocities.com/cfsnova>Practitioners>Counselors)]
Don't assume a counselor with the same diagnosis as you
will be able to offer more validation and practical help.
That might be true, or if you aren't coping as well as the
counselor is, you may be endlessly and unfavorably compared.
Explore self help books while your search for that accepting counselor who really listens and who's able to focus on the issues that people can generally hide from themselves. For example, Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain & More Energy, (by my coauther in this article, Dr. Friedbreg) offers insight into ongoing debilitating illness and mind/body interaction, while providing substantive strategies for reclaiming more strength and stamina.
Once you start therapy, don't be afraid to take breaks.
Weekly counseling is a huge commitment of energy and other
resources. In my adjustment to diagnosis and disability, the
enormous physical, mental and emotional effort required was
worth it. I needed support and coping skills.
After six months, staying home became preferable to more
sessions that left me physically worse. The stairs to my
counselor's office multiplied my symptom and I also
recognized I wasn't ready to delve into the rough stuff
of my life. I didn't have the energy, and I had more urgent
survival concerns at the time. At home, I built on the valuable
lessons and strategies I learned. I sought and tried new coping
techniques on my own, both physical and emotional,
(and later, spiritual).
I eventually started sessions every few months with a very
patient and accepting nutritionist/ stress management/
pastoral counselor with considerable CFS knowledge. When the
energy and eagerness came for me to delve into the tougher issues...
many years later, I had a safe place to go.
From Dr. Fred Friedberg:
Be direct. Ask prospective counselors or therapists if they are familiar with treating clients with chronic illness or chronic pain. The answer you a’re most likely to get is "no." But if they do see people with chronic conditions, ask if they are willing to learn about CFS if you send brief material–– the key word being brief. It's unreasonable to send 200 pages of material and expect the a counselor to read it by the next session. But a counselor's active willingness to learn can be a positive indicator.
Talking to the a prospective counselor over the phone to will also help you see if the potential for good communication is there prior to making an appointment. Screen two or three counselors and then decide which one shows the most promise.
Request reasonable physical accommodations to meet your needs, preferably well in advance of a visit. Also ask about specifics of the facility (like the number of stairs or the distance from the parking lot).
[The Payoff of Patience for Patients ]
When you go to talk therapy because you have a misunderstood, unpredictable, debilitating condition with multiple physical symptoms, it makes little sense to check your body, and what it is going through, at the door. Counseling that offers extra patience and understanding with useful insights about mind/body interaction is invaluable for adjusting to—maybe even for recovering from—illnesses such as CFS.
Knowing what to look for and finding counselor while grieving your lost health and planned life and stressed beyond stressed can feel like looking for a steel needle in the health care haystack... with the bull chasing you 'round the barn! Hopefully these tips can be a magnet to make the task easier, for attracting an accepting counselor capable of helping you ease the stresses on your mind and your body.
Elly Brosius facilitates the No. VA CFS/FMS Support Group, Elly's Gratitude Group, and the Yahoo Group CFSupport. Website: Geocities.com/cfsnova Phone: (703) 968-9818
Fred Friedberg is a CFS researcher and clinician, assistant professor in the Applied Behavioral Medicine Research Institute at Stony Brook University, and author of 6 books and CDs for people with CFS and FM. Website: Lifebalance7.com Phone: (516) 702-4213.
Thank you from the authors to Pam Young, Chronicle editor for her contibutions to this piece!
Left out due to lack of space:
About That “Volunteering” Suggestion
Besides overwhelming most PWCs, a suggestion of volunteer work shows
a lack of respect for agencies needing reliable helpers. Yes, it has potential
to help, but what an organization's demands make the person more symptomatic?
What if the agency isn't prepared to handle volunteers with unpredictable abilities,
to show up, to alphabetize, to do most anything?
My volunteering from home has been therapeutic for me, but what makes
it successful is being my own gentle boss, using the computer, the telephone,
and reading while reclining, doing only what I'm drawn toward.
I save energy by dressing down, skipping efforts of superficial social niceties.
Most in my chronic illness groups who volunteer, while well meaning,
are just not functionally up for the tasks. I redirect offers of help
when from people still overdoing, still pushcrashing, and still sacrificing
themselves to please others, including their counselors. -Elly