The Naked Truth Blog
The Naked Truth is a blog intended to help us all live more fulfilling lives by confronting our self-deception. No sugar-coating. No coddling. Just the honest reflection of you standing naked in front of a mirror. You can read it here or on Psychology Today.
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Jenni Barebitsky
Dr. Jenni Kleinman Berebitsky shares why honesty is important to living with ALS.
Honestly confronting mortality as a human is psychologically challenging—especially when faced with a terminal illness. This topic has been especially relevant to my life of late as my mother, Dr. Karen J. Warren, faces her own mortality. This guest blog by Dr. Jenni Kleinman Berebitsky describes the importance of honesty as she lives with ALS. From the initial diagnosis to her current life experience, honesty with herself and close others has been a profoundly healing part of her journey. I hope that others find her story meaningful and motivating. – Dr. Cortney S. Warren, Ph.D.A Guest Blog by Dr. Jenni Kleinman Berebitsky & Joyce Kleinman
“You have 18 to 24 months to live.“
With those words, time stopped. I froze in my seat while I struggled to comprehend these words. My mind started spinning in the void like an out-of-control top: I won’t see my son turn three? I will never practice medicine? What will happen to my husband? What will this do to my mom? What’s the point of anything? Within minutes, the spinning stopped dead in its tracks. A thunderous rage rose from deep within. I may have been sitting in the doctor’s office calmly, but inside, I was screaming. “This is not happening to me!” I was 33 years old when I was told I had ALS. I cried. For months and months, I grieved the life I had lived. I grieved the life I had yet to live. I grieved my regrets and fears that had obstructed my growth in the past. I knew that I would bear witness to my body—slowly or rapidly—disintegrating by a fatal degenerative neurological condition. The loss was painful. Unbelievably painful. To help pass the time (and distract myself), I devoured meaningless television, went out with friends, took care of my toddler son, leaned on my husband, aimlessly walked the neighborhood or sat alone in a coffee shop. I was hanging on by a thread. I was trying hard to live a normal life, but knowing I was dying had me just going through the motions. For months my mood would vacillate from denial to despair like a pendulum. And despair was winning.
The Opportunities and Ethical Challenges of Media Interaction for Psychologists
People are consuming and interacting with the media at increasingly high rates. Generally defined as a means of mass communication (“Oxford Dictionaries,” n.d.), the media includes radio, television, film, published written content, and the internet. According to 2017 data from Statistica (www.statistica.com) the average U.S. adult spent over 12 hours a day engaging with media, with television being the most consumed medium (“Average Time Spent”, n.d.). Furthermore, recent data from the Pew Institute suggests that 73% of U.S. adults use YouTube and 68% use Facebook (“Social Media Use in 2018”, 2018).
As people increasingly interact with the media, psychologists encounter unique opportunities for engagement (“Reflections on Media Ethics”, 2008). Not only do we use it in our personal and professional lives (e.g., individual Facebook page, advertising a private practice), but are often asked to share our expertise with the public through various communication venues. For example, psychologists may write an ongoing blog, be asked to promote their latest research findings on social media sites, deliver a video-recorded talk, host a radio or television show, publically promote a political bill or policy, or be filmed as an expert on a news station (McGarrah, Alvord, Martin, & Haldeman, 2009).
My personal investigation of media ethics intensified in 2014 after giving a TEDx talk (Warren, 2014). After the talk was posted on YouTube, I received many media requests to offer expert commentary on news channels, podcasts, and even films. For the first time in my career, I received opportunities for mainstream media interaction but struggled to find clear guidelines about how psychologists (clinicians, in particular) should interact with the media to maximize benefits and reduce the likelihood of ethical and legal conflicts. Consequently, I consulted various legal groups to understand some of the key benefits and challenges psychologists face when engaging with the media.
Key Benefits of Media Engagement
Primary benefit engagement is that it provides us with a powerful platform to educate and inform the public about our field its practical application to the world. Psychologists offer expertise in many arenas—from mental health to methodology, to cultural/social behavior, to organizational performance enhancement, to forensic investigation—which can be shared with the public in meaningful ways. For example, psychologists can comment on current world events that are challenging for the public to process and understand (e.g., political strife, mental health issues, natural disasters). Additionally, psychologists can use media to advocate for causes relevant to mental health, policy, and social change (DeAngelis, 2018). Media platforms can also help disseminate our scientific work to a wider audience and promote public interest about a given topic (e.g., “Giving Away Psychology”, n.d.).
Furthermore, engaging with the media can be an enjoyable and rewarding experience, as well as provide additional sources of income to professionals. The American Psychological Association’s Public Action Campaign serves as an excellent example of how psychologists can engage with the media in ways that meaningfully benefit the public (“Public Education Campaign Overview”, n.d.).
Key Ethical Challenges
Despite the important advantages of media engagement, psychologists are bound by ethical principles and legal regulations set forth by licensing boards and professional organizations making interactions more challenging (American Psychological Association, 2017). As such, it is essential to critically consider some key ethical challenges prior to engaging with the media.
1) Knowing and Conveying Your Role One of the most important issues when engaging with the media is knowing and conveying your role to the audience, particularly if it may look clinical in nature. Clinical work is generally described as any work involving a clear doctor-patient relationship (“Medical Definition of Clinical”, 2018). In psychology, we often describe a client-therapist relationship as one that 1) exists because a service is being requested; 2) is a one-way fiduciary relationship; 3) requires informed consent; 4) is confidential; 5) involves payment to the psychologist for professional services provided to the client; 6) is focused on a goal that the client hopes to achieve through the work (Corey, 2009).
Given that treatment is confidential, psychologists must consider whether their appearance in the media is or “looks” clinical in nature. Often, the public may misconstrue what “therapy” entails, so they may perceive you to be a “therapist working with a patient” which in turn can be legally and ethically problematic.
2) Commenting on an Issue versus a Person Media outlets often want psychologists to comment on public figures. For example, when a celebrity is dealing with a mental health or personal issue, psychologists are often called upon to comment on that figure’s emotional wellbeing or mental condition. This was a topic of great discussion when President Donald Trump was elected into office (Basken, 2016). Yet, according to the Goldwater Rule (Levin, 2016), psychologists cannot ethically comment on public figures or people whom they have not clinically evaluated. As such, mental health providers cannot comment on a specific person or public figure in the media.
That said, commenting on an issue or topic that emerges because of a figure’s status is one of the best ways psychologists can inform the public. For example, in the face of a mass shooting or suicide, psychologists can offer expert information on these general topics without saying anything about a specific person.
3) Separate Professional Media from Personal Media Many psychologists interact with the media in their personal lives (e.g., a personal Facebook or Instagram page). In addition, personal and professional information about most people—including psychologists—is readily available online (e.g., family information, home address, professional website, Yelp reviews). Although challenging, psychologists must consider how to handle media overlap between personal and work-related relationships. For example, do you accept “friend” requests from current or former students? How do you network and manage collegial relationships online? In general, separating personal from professional information to the degree possible in the media possible is desirable.
4) Competence to Comment When considering a media opportunity, psychologists must consider whether or not they have sufficient education, knowledge, and training to comment. As a representative of the field, psychologists should ensure they are competent to offer expert commentary on the topic requested.
5) Conflicts of Interest In response to any media request, psychologists should disclose conflicts of interest that may exist. This is particularly important to maintaining credibility. For example, if you are promoting a new brand or business through the media, it is important to state whether you are receiving compensation for your media engagement.
Conclusion
Despite the many important benefits media engagement offers to professionals and the public alike, psychologists face key ethical dilemmas that are highly complicated. Given my increased interaction with the media over time, it was important for me to explore and understand what I could do to benefit the public while protecting current and former clients, colleagues, students, and the profession at large. Consequently, I formulated a Professional Media Policy that outlines my conceptual framework, rationale, and policies related to work conducted in the media (Warren, 2018a). This policy is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License, which means that any mental health professional is welcome to copy or adapt these policies to suit their professional needs with proper citation (see https://creativecommons.org/licenses/by-nc-sa/3.0/us/). In addition, I wrote a Digital Media Policy for Current and Former Clients, which is specific to digital media policies in a clinical context (Warren, 2018b). My comments here are by no means an exhaustive list of the benefits and challenges of media engagement. That said, psychologists will likely continue to receive media requests. As we increasingly accept these requests, I hope these documents bring increased dialogue and clarity to the topic of ethical media engagement.
References cited in the Specialist published twice yearly by the American Board of Professional Psychology in Volume 42 on page 26.
Copyright Cortney S. Warren, Ph.D., ABPP
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Exploring women’s experiences with weight stigma and sizeism in psychotherapy.

Lake Constance
Courtesy of photosforyou, Pixabay
Stupid. Ugly. Sloppy. Lazy. Undisciplined. Fat. These are all words frequently used to describe people who are overweight or obese in Western cultures. A new special issue of Women & Therapy (2019) titled, Make Space for Every Body: Ending Sizeism in Psychotherapy and Training, tackles the important topic of weight stigma and its existence in psychotherapeutic practice.
Weight Stigma
Commonplace in the United States, weight stigma refers to negative beliefs associated with being obese or overweight that emerge in a culture that is sizeist (McHugh & Chrisler, 2019; Kinavey & Cool, 2019). For example, overweight and obese individuals are frequently described using a slew of negative attributes (from smelly and unstylish to lacking in moral integrity) (Puhl & Heuer, 2010). Such negative beliefs about overweight individuals often results in weight-based discrimination (Puhl & Heuer, 2010), or the maltreatment or disenfranchisement of individuals due to their weight.
Weight Stigma in Mental Health Professionals
Given that weight-based teasing and discrimination are associated with poor psychological health outcomes in people of all ages, including depression, poor self-esteem, and eating pathology (Friedman et al., 2005), one might assume that mental health professionals would not hold anti-fat attitudes. Psychologists are, in fact, ethically responsible for the health of our patients and for creating a non-judgmental therapy environment that is free from societally-based bias (Kinavey & Cool, 2019). Yet, emerging data suggests that is not the case.
Many articles in the special issue of Women & Therapy (2019) demonstrate that anti-fat attitudes and behaviors reflective of weight-bias are evident among professional mental health practitioners, even in those with an expertise in treating eating pathology (see Akoury, Shaffer, & Warren, 2019; Brochu, 2019; Harrop, 2019; Kinavey & Cool, 2019; Meulman, 2019; Scott, 2019). For example, in a case study examining interactions between a patient with an atypical presentation of anorexia nervosa and her primary therapist in an inpatient setting, Harrop (2019) described how weight-bias in the therapist contributed to the patient’s denial of her illness and severe ruptures in the therapeutic alliance.
Similarly, my colleagues and I qualitatively explored 15 obese women’s experiences with weight-based microaggressions in psychotherapy (mean BMI = 41.52) (Akoury, et al., 2019). Although few mental health providers openly endorse holding anti-fat attitudes and discriminatory weight-based behavior, they can communicate negative weight-based messages to patients indirectly through microaggressions, which are subtle, often unintentional expressions of negativity toward individuals due to their membership in a marginalized group (Sue et al., 2007). Our data indicated that the most common microaggressions identified by study participants included therapists who focused too much on the client’s weight; therapists who appeared to be less interested in clients because of their weight; and, dissatisfaction with waiting room seating options. Participants also indicated that their weight affects therapy sessions such that they are less forthcoming or more evasive in therapy.
In addition, weight stigma research consistently finds that healthcare professionals in other related fields (e.g., physicians, nurses, dietitians) hold biased attitudes and beliefs about obese patients (Budd et al., 2011; Mold & Forbes, 2013; Puhl & Heuer, 2010). Healthcare providers often characterize obese individuals as unmotivated and non-compliant (Brown, Stride, Psarou, Brewins, & Thompson, 2007); blame them for their weight (Foster et al., 2003); and, demonstrate implicit anti-fat attitudes (Vroman & Cote, 2010).
Recommendations for Therapists and Clients
The truth is that we live in a culture where sizeism and weight-based discrimination is highly prevalent and relatively socially acceptable (Calogero, Tylka, Mesninger, Meadows, & Danielsdottir, 2019). As such, mental health professionals were likely conditioned to believe that obese individuals are personally responsible for their weight problems because of laziness and overeating (Puhl & Heuer, 2010). Consequently, it is important for mental health professionals to educate themselves about sizeism and actively work to avoid enacting it in the therapy office, as they are likely to perpetuate weight stigma unknowingly.
Various articles in this issue of Women & Therapy (2019) offer recommendations about how to tackle weight stigma in the therapy office (see Calogero et al., 2019; Kinavey & Cool, 2019; Pause, 2019; Scott, 2019). In addition to the general rule of monitoring your own bias and not intentionally shaming a client for their body size, two general suggestions for mental health and medical professionals are: 1) to make the office a safe, accepting, non-judgmental space for clients of any body size or shape; and, 2) to not assume that “weight” is an issue for clients that they want to work on in a therapeutic context (whether they are overweight or underweight) (McHugh & Chrisler, 2019).
Naked Truth is This:
Mental health professionals are not immune from intentionally or unintentionally communicating such anti-fat attitudes to their clients. Given that weight bias and discrimination are commonplace in mainstream Western culture (and may even be internalized by overweight and obese clients), it is critical for mental health practitioners to tackle weight stigma personally and professionally. The American Psychological Association’s practice guidelines for treatment of obesity and overweight children and adolescents (2018) should be integrated into any practice that involves obese youth.
Copyright Cortney S. Warren, Ph.D., ABPP
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References
Akoury, L., Schafer, K., & Warren, C. S. (2019) Fat Women’s Experiences in Therapy: “You Can’t See Beyond…Unless I Share It with You”, Women & Therapy, 42:1-2, 93-115, doi: 10.1080/02703149.2018.1524063
American Psychological Association. (2018). Clinical practice guideline for multicomponent behavioral treatment of obesity and overweight in children and adolescents: Current state of the evidence and research needs. http://www.apa.org/about/offices/directorates/guidelines/obesity-clinical-practice-guideline.pdf
Bergen, M., & Mollen, D. (2019). Teaching sizeism: Integrating size into multicultural education and clinical training. Women & Therapy, 1–2.
Brochu, P. M. (2019). Teaching clinical psychology trainees about weight bias. Women & Therapy, 1–2.
Budd, G. M., Mariotti, M., Graff, D., & Falkenstein, K. (2011). Health care professionals’ attitudes about obesity: an integrative review. Applied Nursing Research: ANR, 24(3), 127–137. doi:10.1016/j.apnr.2009.05.001
Calogero, R. M., Tylk, T. L., Mensinger, J. L., Meadows, A., & Danıelsdottir, S. (2019). Recognizing fat as a fundamental right: A weight-inclusive approach to size acceptance and healing from sizeism. Women & Therapy, 1-2.
Friedman, K. E., Reichmann, S. K., Costanzo, P. R., Zelli, A., Ashmore, J. A., & Musante, G. J. (2005). Weight stigmatization and ideological beliefs: Relation to psychological functioning in obese adults. Obesity Research, 13(5), 907–916. doi:10.1038/oby.2005.105
Harrop, E. N. (2019). Typical-atypical Interactions: One patient’s experience of weight-bias in an inpatient eating disorder treatment setting. Women & Therapy, 1–2.
Kinavey, H., & Cool. C. (2019). The broken lens: How Anti-Fat bias in psychotherapy is harming our clients and what to do about it. Women & Therapy, 42: 1-2, 116-130. doi:10.1080/02703149.2018.1524070
McHugh, M. C., & Chrisler, J. C. (2019) Making Space for Every Body: Ending Sizeism in Psychotherapy and Training, Women & Therapy, 42:1-2, 7-21, DOI: 10.1080/02703149.2018.1524062
Mold, F., & Forbes, A. (2013). Patients’ and professionals’ experiences and perspectives of obesity in health-care settings: A synthesis of current research. Health Expectations, 16(2), 119–142. doi:10.1111/j.1369-7625.2011.00699.x
Puhl, R. M., & Heuer, C. A. (2010). Obesity stigma: Important considerations for public health. American Journal of Public Health, 100(6), 1019–1028. doi:10.2105/ AJPH.2009.159491
Rothblum, E. D., & Garrell, N. K. (2019). Sizeism in mental health training and supervision. Women & Therapy, (Vol. 1–2).
The role of body image and weight concern in drug use.

Source: Pexels http://ow.ly/png630nTkoM
Drug overdoses have skyrocketed in a population you might not expect: Middle-aged women.
A recent report published by the Centers for Disease Control and Prevention (CDC) reviewed death-certificate data from individuals who died in the United States between 1999 and 2017 (VanHouten, Rudd, Ballesteros, & Mack, 2019). Results revealed that drug overdose death rates increased 260% from 1999 to 2017 among women aged 30-64 (from 4,314 deaths to 18,110). Broken down further, death rates increased about 200% among women aged 35-39 and 45-49; 350% among those 20-24 and 40-54, and almost 500% in women aged 55-64.
These findings lead us to ask: What leads to such stark increases in drug-related deaths in middle-aged women?
One likely contributing factor is societal pressure to be thin, which often leads to body image and weight-related concerns in women. A growing number of women report body weight and shape dissatisfaction as a primary motivator for both legal and illicit drug use (Brecht, O’Brien, Mayrhauser, & Anglin, 2004; Warren, Lindsay, White, Claudat, & Velasquez, 2013). For example, in a sample of 350 adult methamphetamine users, Brecht and colleagues (2004) found that 36% of female participants started using drugs because of a desire to lose weight (compared to 7% of males). Similarly, in a sample of 297 adult women in substance abuse treatment, my colleagues and I found that 48% of participants started using drugs (in part) to lose weight; 69% were concerned about their weight while in recovery; and 43% were concerned that gaining weight could trigger relapse following treatment (Warren, et al., 2013).
Furthermore, consistent with weight concerns, women are increasingly using drugs that lead to increased mood and decreased appetite. In the recent CDC report (VanHouten, et al., 2019), the type of drugs used that lead to overdose changed from 1999 to 2017. Specifically, drug overdose deaths increased drastically for those using synthetic opioids (1,643%), heroin (915%), benzodiazepines (830%), prescription opioids (485%), and cocaine (280%). While most of these drugs are opioids used for pain management(which also tend to produce a sense of euphoria, making them attractive), stimulants (like cocaine and ecstasy) are increasingly popular among women because common side effects are increased energy, elevated mood, elevated metabolic functioning, and loss of appetite (Office of National Drug Control Policy, 2008).
Despite the clear relationships between substance abuse and body image/weight concerns among women, very few existing substance abuse treatment programs that include body image, weight, eating pathology, and health knowledge as core intervention targets (Lindsey, Warren, Velasquez, & Lu, 2012). Consequently, my colleagues and I created and tested a 12-week supplemental health and body image curriculum for women with weight and body image concerns who are in substance abuse treatment, called Healthy Steps to Freedom (HSF; Lindsey et al., 2012). Outcome data from 124 adult women revealed that thin-ideal internalization, body dissatisfaction, and eating disorder symptoms significantly decreased after HSF program participation, whereas health-related behaviors (e.g., increased healthy food consumption) and knowledge (e.g., understanding of basic nutrition, exercise) increased.
The Naked Truth is This:
Middle-aged women are dying from drug overdoses at increasingly high rates. Although this is often not the stereotypical demographic we picture when we think of “drug addicts,” middle-aged women are increasingly using drugs, in part because of body weight and shape concerns. Consequently, it is critical that researchers and treatment providers understand and address body image components of drug use in women.
Copyright Cortney S. Warren, Ph.D., ABPP
References
Lindsay, A., Warren, C. S., Velasquez, S., & Lu, M. (2012). A gender-specific approach to improving substance abuse treatment for women: The Healthy Steps to Freedom (HSF) program. Journal of Substance Abuse Treatment,43,61-69.
Mazure, C.M., & Fiellin, D.A. (2018). Women and opioids: Something different is happening here. Lancet, 392, 9–11.
Office of National Drug Control Policy. (2008). State of Nevada: Profile of drug indicators. Retrieved from http://www.ondcp.gov/statelocal/ nv/nv.pdf.
VanHouten, J.P., Rudd, R.A., Ballesteros, M.F., & Mack, K.A. (2019). Drug overdose deaths among women aged 3064 years—United States, 1999—2017. Morbidity and Mortality Weekly Report, 68(1), 1-5. Retrieved from https://www.cdc.gov/mmwr/volumes/68/wr/mm6801a1.htm
Warren, C. S., Lindsay, A., White, E., Claudat, K., & Velasquez, S. (2013). Weight-related concerns related to drug use for women in substance abuse treatment: Prevalence and relationships with eating pathology.Journal of Substance Abuse Treatment, 44,494-501.
Understanding the warning signs and steps to intervene can save a life.

Photo Credit: @Bourdain
Anthony Bourdain. Kate Spade. Robin Williams. Chester Bennington. Chris Cornell. In the last year, a number of very public deaths have brought the topic of suicide to the forefront of public health.
And rightfully so, because research suggests that suicide rates are on the rise. A report published by the Center for Disease Control on June, 2018, suggests that, in 2016, almost 45,000 people died due to suicide in the US alone. Moreover, suicide rates went up more than 30% from 1999 to 2016 in more than half of US states. In youth and teens, suicide rates have almost tripled since the 1940’s.
Although most of us associate suicide with depression and mood disorders, emerging data suggests that only about half of people who die by suicide have a known mental health diagnosis. As such, effective suicide prevention efforts focus on identifying risk factors for people who die by suicide.
The truth is that a number of factors contribute to suicidal behavior. According to 2015 data from the CDC’s National Violent Death Reporting System, the most common factor that contributed to suicide among those with or without mental illness was relationship problems (42%), followed by a crisis situation in the past or upcoming two weeks (29%) and problematic substance use (28%).
Additionally, the CDC highlights 12 key warning signs of suicidal behavior. They are:
1) feeling like a burden,
2) being isolated,
3) increased anxiety,
4) feeling trapped or in unbearable pain,
5) increased substance use,
6) looking for a way to access lethal means to hurt oneself or others,
7) increased anger or rage,
8) extreme mood swings,
9) expressing hopelessness,
10) sleeping too little or two much,
11) talking or posting on social media the desire to die,
12) making plans for suicidal behavior.
So, what can we do if we believe someone in our life may be at risk of attempting suicide? #BeThe1To outlines five simple action steps that we can use to talk to loved ones about suicide.
1) ASK the person directly how they are and if they are thinking about suicide in a non-judgmental and supportive way. This can open the door to discussion if the person is open to talking. Even if they don’t answer immediately, they may be more comfortable talking to you in the future. Then LISTEN.
2) KEEP THEM SAFE. If you believe that suicidal behavior is an issue, you want to understand how you can help keep them safe. Try to find out whether they have tried to kill themselves before; if they have a plan; and their timeline. If you believe they are at immediate risk, you may need to call 911. If you believe that they are thinking about it but don’t have a clear plan in place, you want to encourage them to get rid of any lethal means (e.g., firearms, medication) and get help to address their suicidal ideation (e.g., a good therapist).
3) BE THERE. This is simply about being available and connected to the person. Calling or texting each day. Listening to the persons’ struggle. Do not commit to anything that you are not willing to do, but research suggests that feeling connected to a social group acts as a buffer against psychological pain and hopelessness.
4) HELP THEM CONNECT. You cannot be the only source of support in the person’s life. But social support is key to suicide prevention. Consequently, helping the person connect with others who can support their process is critical. Lifeline (1-800-273-8255) is an excellent resource that can assist in creating a safety plan and developing skills for dealing with the hardest emotional moments (e.g., distress tolerance).
5) FOLLOW UP. Continue checking in on the person. Offering ongoing support and care can reduce the risk that they will attempt suicide.
The Naked Truth is This: Suicide is an increasingly common cause of death in the United States today. Being aware of the 12 key warning signs of suicidal behavior may save the life of someone you know. If you are concerned, directly ask them about suicidality, try to keep them safe, be there, help them connect, and follow-up over time. Be the one to ask and try to make a difference.
Copyright Cortney S. Warren, Ph.D.
Read More...Seven questions to answer as you confront death and embrace life.
Some of the biggest lies we tell ourselves center around the subject of death. We may avoid thinking about mortality by refusing to write a will. We may have no idea what end of life options our parents or loved ones want when confronted with death because we don’t want to talk about it. And, most of us think that being diagnosed with a terminal illness is simply something that couldn’t happen to me.
The truth is that all of us will die. Everyone we love will die. And a large number of us will be diagnosed with a terminal illness before our ultimate demise.
This guest blog written by my mother, Dr. Karen J. Warren, describes the questions she had to answer for herself after being diagnosed with a terminal illness. Through the process of self-honesty and evaluation, she hopes that these questions can serve as a practical example of how to use death as a platform to understand yourself and embrace the time that you have left.
– Dr. Cortney S. Warren, Ph.D.

Drs. Karen & Cortney Warren
A guest blog by Karen J. Warren, Ph.D.
A follow-up blog to Watching Myself Die
I am dying. Unless I get hit by a truck, I know how I will probably die. And it won’t be pretty.
On February 22, 2016, I was diagnosed with a terminal illness called Multiple Systems Atrophy (MSA). It is a fatal, progressive brain disorder that affects the neurological body functions such as swallowing, digestion and blood pressure. Learning I had MSA was a blow. I was scared. Angry. Sad. I thought, “Okay, I have this disease. Now what do I do? What do people do when they learn they have a terminal illness? How do I proceed with my life?”
Looking back, I see that my process for dealing with my MSA diagnosis involved answering seven questions. These questions may be helpful to anyone diagnosed with a terminal illness and their loved ones as they move forward from the diagnosis.
1. Whom should I tell about my illness?
When I was first diagnosed, I had to figure out who to tell. And how.
I began by telling those I am emotionally close to—my daughter, my siblings and my dearest friends. Then I told people who needed to know because I would need their assistance to “put my affairs in order”— my lawyer, financial advisor, accountant and various healthcare providers.
When you tell people, they will want more information. Like me, they had never heard of MSA. And, like me, they were full of questions that I could not answer. There may be conflicting emotions. Most importantly, remember that you don’t owe anyone that information. Tell who you want or need to tell, and don’t feel pressured to tell anyone else.
2. What do I need to prepare for life moving forward?
Once I told a few people of my health news, I felt totally overwhelmed. I am a single mother who has lived alone for almost 25 years. I was comfortable with that—until I was diagnosed with MSA. Now the reality of living alone was terrifying, because I now knew I would need help beyond what is provided by physicians and health care practitioners.
Overwhelmed by this question, I turned to my primary care physician for help. I asked her, “Who will take care of me? What do I need to ensure that I am cared for?” Her answer: “You need a case manager.”
My first phone conversation with my case manager was just what I needed. She encouraged me to make choices about what I want to do with the rest of my life and to figure out how to give life meaning as a dying person.
That stumped me. As a retired Philosophy Professor, surely I was capable of knowing what gives my life meaning. But, in fact, I didn’t really know. So, I began by asking myself what I really cared about and wanted to do.
3. What do I want?
Most of my life I have done what I needed to do or what I should do. Now the question was about what I wanted to do.
Listening to others who are dying from a terminal illness, I realized that often what many of us want is just to do ordinary things—wash the dishes, clean the house, go for walks, work in the gardens, go for a swim, use an exercise machine. And, most importantly, be with the people we love.
For me, this meant spending time with loved ones doing what they loved doing. So, during this past year, I have gone to an opera, The Ryder Cup golf tournament, Vikings football games, a glorious day at a spa, Hawaii, and Florence, Italy, all with my treasured family members.
4. What really matters?
After several months of living with my illness, I knew that what gives my life meaning, what really matters to me, are relationships—relationships with myself, with other people, with animals, with the natural world. Creating or nurturing these relationships is what I value most.
How does this translate into how I live my life going forward? It comes down to this: When I am no longer able to communicate or have interactive relationships with others, my life will have lost all meaning to me. When I am nearing the end of life, I want to be permitted to die. I have an Advanced Care Directive that specifically states which medical treatments I do (and do not,)want when I get close to dying. Ultimately and unequivocally, I want end-of-life options that permit me to have medical aid-in-dying.
5. Do I have time for this?
The precious time I have left matters! I found myself asking, “Will doing this or saying that make a positive difference to my health or enhance my well-being?” For example, does it make a difference to me whether I participate in a research program, take an X-ray or have a mammogram? My guiding principle has been this: “If doing something makes a positive difference in my life or enhances my well-being, then do it; if it doesn’t, then don’t do it.”
6. Will this action enhance my quality of life?”
Medical professionals (and others) often suggest to people with a terminal illness that we can and should do things that enhance our quality of life. But what does that mean? I don’t know, exactly. But there are many practical things I can do that enhance my day- to-day living. For example:
- Save the cards, letters, emails, and text messages people send you. They are living eulogies—eulogies before you die—that you can read and enjoy now.
- Post updates about your heath and experiences on a website designed expressly for interaction between you and those who care about you (such as Caring Bridge).
- Find a support group—for you and your caregiver(s). There really is no substitute for being with others with the same challenges. And invariably, they provide helpful information of the “this is something I do” nature.
- Write letters to your family and friends that they will have after you die. I am writing “electronic love letters” to my two grandchildren. Every few months I make a video recording for each one
- Plan to do something fun or pleasing each day.
- Do something new, especially if it nudges you to overcome the “What will people say?” question.
- Schedule activities to look forward to. It really makes a difference to one’s mood and quality of life.
7. What can I do to help others in my position?
Being diagnosed with a terminal illness is tough. In the midst of the emotional process of dealing with the illness, there are a number of legal issues we all encounter as we die. Most importantly, medical aid-in-dying options. For me, this came in the form of supporting legislation to legalize end of life options for the terminally ill. For others, it may be another type of engagement. Staying connected to a social group or cause is helpful on many levels.
Conclusion
Although there are challenges with having a terminal illness, there are also great gifts.
I have time to prepare for dying—for example, by giving away things I don’t need, doing things I love but may have neglected, and renewing relationships with old friends. Healing unresolved conflicts in relationships and ensuring that I am comfortable with my relationships before I die.
Additionally, I now understand that I am dying and I am living. Dying is a part of living and living is a part of dying. Every day I remind myself that knowing I am dying offers me the opportunity to be my best self, to spend the time I have left by living fully in the present.
Finally, the most significant gift was totally unexpected: Sometimes I am happier than I have ever been. Because I have let go of the past and the past has let go of me.
It simply isn’t relevant anymore. I live more centered in the present moment than I ever have. And I am just plain happy to be here. Right now.
Dr. Karen Warren Presenting to the Cleveland Clinic Lou Ruvo Center for Brain Health
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