Abstract
Keywords: Mental health, self-care, patient-provider relationship, participatory medicine, shared decision making, collaborative care.
Citation: Johnson-Quijada S. An introduction to self-care. J Participat Med. 2012 Mar 16; 4:e6.
Published: March 16, 2012.
Competing Interests: The author has declared that no competing interests exist.
When my older brother’s baby was born, she was vulnerable and premature, so tiny that she needed help to live. Now when I look at her intelligent smile, thriving body, and the lovely nape of her neck with her baby curl of hair, I have difficulty thinking about those precarious first days of her life at the University of California, San Diego Medical Center (UCSD). As a physician myself (I am a practicing psychiatrist), it is not always easy to be in the role of patient, or to look on from the sidelines while loved ones manage the uncertainty that comes with placing trust in medicine during illness or suffering. A little over one year later, while playing ball with my niece on the floor, I started to reflect upon the ways my brother’s experience — indeed, our shared family experience — at UCSD has shaped my own clinical practice of medicine.
Collaboration Leads to Inspiration
The physicians at UCSD were highly collaborative with my big brother, including him in their daily decision making, informing him of any medical study results, and asking his opinion regarding treatment options. They encouraged him and my sister-in-law to participate and they served as examples of physicians who valued participatory health care.
I’ve sometimes struggled to collaborate with patients at various points during my practice of medicine. Providing patients with clear explanations of their illness and data about their mental health care is not always as straightforward as it seems. Hearing my big brother talk about how he was treated, however, has emboldened me to modify my communication with my patients in ways that enable them to engage more effectively in their care.
Choosing Self-Care
Making a choice to emphasize trust and transparency with patients can be a challenge for any physician. I have noticed a paradigm shift taking place in my own clinical work as I move forward to embrace this improved participatory model of medical practice. In my practice with psychiatric patients, I describe this model to them as “becoming a friend to yourself,” or “self-care.” These terms are interchangeable.
What is my working definition of self-care? It is most easily described with the phrase, “Everything starts and ends with Me,” in which I use the biopsychosocial model to direct our attention (the physician’s and the patient’s) to what is fundamentally valuable about self-empowerment and personal accountability. Using this terminology of “Me” is a means to encourage us to see ourselves as vital beings worth the work it takes to achieve health. “Me” is capitalized because it names the bit in each of us that is unchanging, that is more than our memories, more than the constructing forces of time, and it remains even when our bodies are gone. “Me” is the essence in us that is special, not because we suffer but because we are human. Capitalizing and speaking of the “Me” in this way also gives us a tool to view ourselves more objectively. Me. Lovely, isn’t it?
For my patients, I explain that self-care is living consistently with the belief that they are a friend to “Me,” or in other words, to themselves. We share the hope that each patient practices being his or her own advocate, knowing that he or she is valuable and that his or her brain health is worth the fight. Self-care also entails the practical: review of sleep patterns, prescriptions of medicine, and monitoring of diet and exercise. In doing so, they transcend the stigma associated with brain illness and the frequently associated victim-role. They work through relationships that were damaged by symptoms of mental illness. They humbly account for their lives, remembering that each person is free despite past difficulties. At any time, if the path to best treatment becomes unclear, they can simply ask, “Is it friendly to Me?”
The Challenges and Rewards of Self-Care
Last spring, I began work with Patricia. She came into my office on our first meeting with a self-diagnosis. Sure she was struggling with ADHD, she explained that she couldn’t focus, had difficulty connecting with others, and acted impulsively. This limited her intimacy, she felt, with people she wanted in her life. Patricia, after reading about ADHD, came to me hopeful that a prescription for a stimulant would improve her symptoms. She projected confidence self-diagnosing. Her temperament and coping skills predisposed her to this.
Self-diagnosis can feel more congruent with a patient’s inner self, depending on his or her temperament. Self-diagnosis might intuitively feel more congruent than a diagnosis by a physician. However, let’s consider how it might also be influenced by a patient’s fear of, or lack of trust in, his or her medical provider. My challenge with Patricia was to support her good instincts of participation in her own care, while opening her mind to choosing a level and type of care that would suit her biopsychosocial needs. Her self-diagnosis was informative for me as a psychiatrist, and I was able to use her self-reported symptoms to give nuance to my own diagnostic tools. Patricia’s self-diagnosis showed that she was in search of self-knowledge, an attribute that might ultimately enable her quest toward mental health. Curiosity and self-interest can be empowering.
Patricia was fairly sure that receiving an ADHD diagnosis would explain to the people she had hurt why she hurt them. It would give her a name for the chaos. Having a diagnosis that comes from a figure of perceived authority, say a Doctor of Medicine like myself, offers a patient a reason for his or her suffering. It is like a judge who pronounces one person innocent and another guilty. This is not a bad or good motive, yet the naming of such an illness, if different from her own, might regrettably corrode the patient’s trust in her physician. In my relationship with Patricia, I perceived her defensiveness and insecurity when I began to question her diagnosis.
As a practicing clinician, it is not simple to resist the lure of treatment when it would be easy to make our patients happy. After all, if we agree with the patient, the visit is a quick one. If we do not agree with a patient’s self-diagnosis, there is much more work to be done. It takes more time to build trust and to educate him or her to be informed and involved participants in his or her own care. It takes time to sell the benefits of becoming a “friend to yourself,” or, in other words, putting in the time and energy to treat oneself the way in which one would treat a valued friend. Even though it is easier not to, however, when we take the time initially to collaborate with the patient, we spend less time later patching a poorly constructed relationship and treatment plan.
Being a patient takes courage. Happily, courage is more easily found with insight or at least the ability to see into oneself: the ability to accept vulnerability, humility, and self-respect. Yet I have noticed that those traits are likewise required of a successful practitioner.
When Patricia came into my office wanting my signature on her diagnosis, I noticed myself beginning to wonder how her opinion of me as a medical professional might change for the worse if I challenged her to question her information. I did not like the view from the gutter as much as I did up on the pedestal. I had to find the humility that comes with being a teacher: in the progressive paradigm of participatory medicine, the doctor-patient relationship is evolving to one of reciprocal teaching and learning.
This relationship becomes, in the ideal, an alliance and a connection. When my patients enter my office feeling defensive, agitated, or angry, I know their feelings aren’t personal to me. What is personal to me is to remain present and to find the teaching opportunities that participatory medicine, or in my own words “self-care,” both celebrates and facilitates.
Understanding Patricia’s agenda in making her appointment with me was a boon in our efforts to build trust with each other. Although Patricia did not have a clean diagnosis of ADHD, I developed a differential diagnosis that began our work to heal her biological, psychological, and social “Me.” She presented symptoms of frontal lobe disinhibition, inattention, and anxiety spectrum disorder. We started working on Patricia’s coping skills, developing patterns that were friendlier to herself. She found effective help through a good DBT (dialectical behavioral therapist) outside of my clinic. She cleaned up her sleep hygiene and prioritized exercise time, working to let go of her guilt at taking time apart from her children in order to do so. Patricia also began to take medicine. In the course of treatment, Patricia and I learned quite a bit from each other.
Just as I champion self-care for my patients, I try to practice being friendly to myself, too. My personal journey with self-care enabled me to view Patricia’s quest for brain health with more compassion. Patricia, in turn, has added to my learning to see all people from the self-care angle. I look for those sticky bits where we can connect and collaborate, even when I am out of my office, even if I am stuck in a long line at the grocery store. I ally myself with a person’s self-respect, with what I believe to be their intuitive desire to be friends with themselves. My quality of practice has definitely improved. I believe we all are men and women of great value.
Physician, patient, friend, or family member of a suffering loved one — who isn’t blessed when he or she sees the courage to face stigma, shame, and bewildering illness? Who isn’t more informed every time someone chooses the freedom to do self-care, chooses to live, fights hard as my niece did, or as Patricia did, and shows what that fight is worth? We all learn from the work of that fight. When someone loses bits of her identity to the defacing ravages of disease but still knows she is worth the labor, like Patricia, working beside her as her clinician is one of the best places in the world to be.
Copyright: © 2012 Sana Johnson-Quijada. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
I enjoyed reading your article about your patient, Patricia. I often find that the internet, along with word of mouth from friends who have been diagnosed with ADHD and other disorders)has its good and not so good sides.
The internet has so much information that folks (including myself) can find symptoms that fit some of what the self-diagnosis is, and it reminds me of astrology, where the person reading their “sign” will find some parts to be fitting for them, ignoring the others. The fortune cookie messages remind me of this same experience.
It is as though there is too much information and we all get overwhelmed to the point that when we go to our healthcare providers, we seem like hypochondriacs.
I myself, as a psychologist, recently experienced a Major Depression episode and was clueless about what was going on with me, and it took my psychiatrist and primary care physician to convince me that the stressors affecting me had left me agitated, exhausted, sad and angry. It was the anger part that I had not connected to depression as I have found that practitioners and the public alike are looking for the very sad, lethargic figure that we see on the ads for anti-depressants.
Along with my healthcare providers, I had to search out my own remedies. They ended up being: fresh air and sunshine, taking walks with friends, CBT, sitting meditation, an antidepressant, avoiding folks that would not believe that I (a psychologist!) was experiencing Major Depressive Disorder. Because this was new territory for me, the people around me struggled with this part of me that was struggling in a way they had not seen. How could this competent successful woman being taking such a nose dive? The facts were quite clear: I had lost a full time job (and thus a career) that had nothing to do with my performance, my husband of 12 years decided he wanted a divorce 3 months after the job loss, I was the caretaker of a dear friend 3 days a week with ALS who died 4 months after my job loss and 1 month after my ex-husband told me he wanted out of the marriage and I wish I could tell you that it was a short period of time for recovery.
Yet it was not. I am getting better finally after 2 years from the onset of this, and 10 weeks ago, had a total left hip replacement. That was easy getting better from that. Initially, I had a walker and I was stunned by the kindness I received from strangers as a result of that equipment. Even the cane I soon used afterwards alerted people to my disability.
Yet mental health problems do not show up on the outside. There are no crutches, canes, wheelchairs or walkers for ADHD, depression, bi-polar, ODC, schizophrenia and you do not get a Handicapped Parking plate to use. Because people cannot see the inner turmoil on the outside and because our society has its “pick yourself up by your bootstraps” attitude, the person with internal suffering looks OK and is not.
I am so glad that you were able to listen to your patient, not confront her on what she thought was wrong, incorporated what might be wrong with your differential diagnosis and engage her enough that she came back to you. My guess would be that had you not been kind and respectful enough to do that, she would not have return for another visit.
My own personal fight with depression has given me compassion about the “sameness” I have with all folks in this world, rather than the “differences”. I have come to understand that many people I work with are healthier than myself, and that their “pearls of wisdom” are gems they share with me. If any of my “gems” are useful for them, I do the Happy Dance. At the same time, I am well aware that they did all the hard work to get better. Just as I had to do my physical therapy for my hip (and I am walking like a normal person now! Whee!), there is lots of footwork other than taking medications in getting better from internal pain.
Getting better from internal suffering requires (for me) learning to do the exercise (such as you did with her sleep hygience) and unlearning some distorted thinking that began over 2 years ago. And along the way, as my emotional and spiritual grew stronger, I began to make connections of the theme and recreation of what allowed this to happen yet only when my spirit and brain were ready to handle the lightbulb moments. Those insights come only when we are strong enough to handle them, and to learn from them into getting better is a gift within itself.
While my healthcare team was so valuable to me because they could see things that I could not and most importantly because they believed me when others did not, it was following their suggestions once out of their offices that forced me to become a “cooperative patient”. Most of this work had nothing to do with meds. It was largely common sense and asking myself “What brought me joy when I was 7 years old?” Playing. Hanging with friends. Not worrying about stuff that I could not control anyway. I wish I had my mom around as well as she was a great mom and resource when I was 7 years old.
At age 56 now, I realize there is no “mommy, daddy, or babysitter” though every human being reaches and grasps out for that caregiver when we are in pain, physical or mental. Finding those few folks that will come when you call them, hang with you when you are a mental mess, and go out with them socially when every fiber of your being screams to stay under the covers of your bed is therapeutic, loving and compassion.
I have come to think that the development of mental health care teams like this might be helpful. I once had a client tell me “You are my paid best friend.” How true that was, though I loved her anyway. If home health care includes nurses and physical therapist, perhaps it should include caregivers who are just kind and tolerant people. What is wrong with paid best friends or paid friends when the person who is suffering is feeling alone and without anyone?
Sana, self-care is so important. I know that on an intellectual level and have to force myself to do it. I am a mom of two grown sons so I know the experience of being a brand new mom, and raising them brought the term “multi-tasking” to a new level, and a not so good one. I learned to be a wonderful caretaker and now am learning how to be a healthy care receiver.
I love how you came alongside Patricia, did not collude while doing so and let her “internal treatment plan” evolve so that you can run your ideas by her. I find myself going for walks with my clients now, getting us out of my office, while we both benefit from the fresh air, sunshine and exercise. Gosh darn, clients sure like it and they talk more and come up with these fab ideas! They are our experts and I feel blessed to be with them for their journeys, as like yourself, I learn and benefit more from them than they could imagine.
Thank you so much for your article. You go, woman.
Jacque Elder
Dr. Jacque Elder, Psy.D., CADC
This well-crafted article was both informative and motivational in scope. As a public health professional who specializes in health behavior change, I too have experienced both ends of the spectrum…utilizing my role as an “authority” to “convince” someone to change versus choosing my role as a collaborator to facilitate a sick person’s health-producing choices.
Dr. Sana Johnson-Quijada adds another dimension as she describes the complications of working with Patricia. I noted the professional high road Dr. Sana Johnson-Quijada took when she risked losing credibility with Patricia when she did not endorse the self-diagnosis of ADHD.
The description of a journey by both clinician and patient toward the freedom to do self-care inspires me to keep on fighting for quality living… Thank you, Doctor, for living your life on such a quality level which empowers you to build your credibility as both a psychiatrist and a humanitarian.