DBSA e-Update February 2018




The Pursuit of Wellness

What is wellness? This is an important question facing persons living with mood disorders. For the last 25 years, much of the health care delivery system’s focus has been on symptom reduction. However, a person can experience such improvements while still finding true wellness elusive.

Of course, the first priority for treatment is ensuring a pathway out of crisis, but symptom reduction should not be the end-game for treatment. An empowering and holistic approach would instead be to think in terms of self-defined wellness goals—an integrated experience of how someone with a mood disorder might live, work, play, and pray.

Several years ago, DBSA launched an initiative to transform the definition of wellness. We believe that all stakeholders in the health care system will benefit from raising the bar on what it means to be well. Like other campaigns DBSA has rolled out in recent years (Positive Six, Target Zero, The Year Of Thriving, and From I to We), the core concept is to change the topic of conversation from illness to wellness.

Among our strategies in this current campaign is ensuring that treatment measurements are focused on endpoints important to peers. Through partnerships in both private and public communities, DBSA is bringing the voice of peers into the data gathering and decision-making that drives new treatment development, clinical practice, and reimbursement. Central to this idea is changing health care delivery system measurements to include patient-centered outcomes.

We’ve already achieved several milestones. In November 2017, DBSA convened a scientific workshop which brought together peers, family members, clinicians, researchers, pharmaceutical companies, and the FDA to dialogue about how to incorporate peer-defined measurements of wellness into drug development, clinical trials, and the FDA approval process.

In 2018, we are continuing the campaign with peer-designed focus groups to learn firsthand how peers define wellness in their lives. Surveys will further refine what we learn by asking the DBSA community to rank the wellness domains that will result from the focus groups. We hope to reveal these findings with the FDA at an externally led patient-focused drug development meeting in late 2018.

These are exciting times: a point of view which has not been heard enough may, finally, be about to receive more focused attention and alter the collective thinking about "the successful treatment of mood disorders." Keep your eye on DBSA as it advocates for this at the national level, hoping to leverage its community of support group participants as focus-group recruiters―and to grow its network of Wellness Tracker users into a larger, more vocal group shedding light on what "living in wellness" actually means.   

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Life Unlimited
Nathaniel Hall

Read more inspiring stories. If you would like to participate in our Life Unlimited feature by sharing your story, please submit your contact information.

Life Unlimited: Nathaniel Hall

I believe I was born with a predisposition for mental health conditions and that substance use disorder triggered its onset. During my adolescence, there were several trips to the ER for substance overdoses. Soon I began to hear voices outside my bedroom door taunting me. I was so frightened that I would leave my room during the night and stay away for weeks at a time. I bathed in a nearby spring pool and slept in the back of my station wagon in a parking garage. I pawned all of my belongings to have money for food and gas. This went on for months until I voluntarily checked myself into a psychiatric hospital, which I did three times in a six-month period. I was diagnosed with Schizoaffective Disorder, a combination of a thought disorder and a mood disorder.

The emergence of my mental health condition was the first time in my life that my parents worked together as a team to help me with my problems. Their support led to treatment not long after the onset of my symptoms. The leader of the drop-in center was definitely an important member of my support system, and the center was a place for people with mental health conditions to go to find even an iota of meaning and purpose in their lives. It was a spark of hope for many of us, but when I arrived things were so bad that it was an accomplishment to simply play a game of Scrabble with a group of people.

For nearly 12 years since then I have been working in the field of wellness recovery. I have a Bachelor’s degree in psychology, received my Wellness Recovery Action Planning (WRAP) certification two years ago, and am currently a certified Recovery Peer Specialist. When I feel overwhelmed by the mistakes I have made in my life, my feelings are quieted by the realization that I may have made a difference in someone else’s life today. There is a degree of irony in the work I do: many of the peers that I interact with through my employment are the same people I interacted with at the drop-in center years ago.

I have learned that I am a human being just like everyone else: I have real feelings and emotions, and I am a sensitive person. I know that I have the right to make mistakes, and I have the right to feel afraid and say, “I don’t know.” I know that if I keep working, utilize my support system, and always take my medication and avoid drugs and alcohol, I will stay on the recovery path.

Many people have to be in the darkness before they can truly know the significance of stepping into the light. Mental illness miracles emerge from delusions experienced in the darkness. I hold onto the hope that the unpleasant feelings and emotions can improve over time, and that darkness will become not just light but life.

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DBSA

Note from the Management Team

Phyllis Foxworth, Advocacy Vice President

My husband and I start each morning with a cup of coffee and conversation about work, family, challenges, victories, feelings, and wellness. During these quiet moments we share intimate feelings about how we are each doing with our wellness strategies. What is most remarkable is not that it took us 20+ years of marriage to learn that these conversations are an integral part of our wellness tool kits: the real eye opener is how differently we each define the components of wellness.

What’s important to me in my wellness journey does not necessarily match what’s most important to him, and vice versa. How we each experience adversity is very different: everything from what causes adversity to how we cope and how long it takes to regain balance. What we do have in common, though, is that we both know what dimensions we have in our life when we are well—and what is missing when we are off-balance.

That’s why DBSA is dedicated to working with all stakeholders in the health care delivery system to transform the definition of wellness—one that includes patient-centered measurements. We’ll keep you updated on milestones along the way and share how you can be involved.

My husband is a patient man. He listens every morning as I describe my work. This is how both he and I know we are well. And we listen for warning signs that one of us may be struggling. I, too, am a patient person, and I know that someday the perceptions of stakeholders in the health care delivery system will be transformed: they won’t be evaluating just the status of symptoms as a measurement, but will be listening for whether or not their customers, patients, or health plan subscribers are experiencing self-defined dimensions of wellness.

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DBSA Chapters

Chapter and State Organization Outstanding Service Award Nominations

Do you participate in a DBSA chapter or state organization? If so, please consider nominating a chapter, state organization, leader, or professional advisor for a 2017 Outstanding Service Award. These organizations and individuals provide much-needed services to their communities, and their hard work should not go unrecognized. Make your nomination online at DBSAlliance.org/ServiceAwards today! This year’s submission deadline is February 28, 2018. 

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Depression and Bipolar Support Alliance

Advocacy

The DBSA Advocacy Team recently sent letters to members of Congress on two issues that have a direct impact on the health of those who live with mood disorders. Our letter to Congressman Joseph Kennedy (D-MA) and Senator Elizabeth Warren (D-MA) commended them for the introduction of the Behavioral Health Coverage Transparency Act, which builds on the work of the Mental Health Parity Act, the Affordable Care Act, and the 21st Century Cures Act. 

The second letter, addressed to Representatives Brad R. Wenstrup (R-OH) and Raul Ruiz (D-CA), thanked them for the introduction of the Restoring the Patient’s Voice Act of 2017.  This bill would require a group health plan regulated under ERISA to establish an exception to medication step therapy protocol—a practice that requires patients to try medications in a certain sequence, forcing them to try cheaper medications before being able to "step up" to what may be the most appropriate medication. DBSA opposes this controversial health insurance protocol because this way of approaching treatment can actually impede a patient's path to better health. Studies show that medication restrictions such as step therapy can significantly affect mental health treatment outcomes.

Subscribe to the DBSA advocacy platform to stay informed on how you can help advocate on these issues as they move forward in Congress. 

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Depression and Bipolar Support Alliance

Depression Survey Now Mobile-Ready!

Have you been meaning to take DBSA’s survey on depression, but are never on your computer when you think of it? Good news: the survey is now mobile-friendly and can be taken from your phone as well as on a computer or tablet! We’re still in search of another 100 respondents who live with depression to share their experiences with us. If you have already taken the survey, please consider sharing it with your friends! Follow this link to participate!

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Depression and Bipolar Support Alliance
Greg Simon, MD, MPH, is a psychiatrist and researcher at Group Health Cooperative at the Center for Health Studies in Seattle. His research focuses on improving the quality and availability of mental health services for people living with mood disorders, and he has a specific interest in activating consumers to expect and demand more effective mental health care.

Got a nagging question? Submit your questions to Ask the Doc online. Also, take a look through our Ask the Doc feature page, a comprehensive archive of past columns, which may already have the answer to your questions.

Ask the Doc

Is it safe to stay on mood stabilizers when you are pregnant?

We think about medications taken during pregnancy in three general categories:

  • Medications known to cause birth defects or other serious problems
  • Medications not known to cause birth defects—but which we can’t be confident are safe
  • Medications we know are safe

Unfortunately, none of the mood stabilizer medications are in that third category. None have been proven to be completely safe or free from risk.
Some of the anticonvulsant-type medications (carbamazepine, oxcarbazepine, valproate, and divalproex) fall into the first category. They can significantly increase the risk of serious birth defects, including spina bifida and other neural tube defects. With these medications, we say this: don’t take them if you are pregnant and don’t get pregnant while you are taking them.

Because lamotrigine is an anticonvulsant, we used to assume that it also increased the risk of the same serious birth defects. However, newer research has not shown that to be the case, so we now put lamotrigine in the middle category. There is no clear risk of birth defects, but we don’t know enough to say that there is no risk. Any woman considering taking lamotrigine during pregnancy must weigh the possible risk against the risk of not taking lamotrigine.

Similarly, lithium was once thought to significantly increase the risk of heart defects. Newer research finds that there is some increase in risk, but it is smaller than previously believed. As a result, lithium now also falls into that middle group: we have to balance possible risks against the risks of stopping lithium. Women who choose to continue lithium during pregnancy should have more frequent lab tests, since the physical changes during pregnancy and delivery can cause big changes in lithium levels.

The second-generation antipsychotic medications (risperidone, olanzapine, quetiapine, ziprasidone, aripiprazole, etc.) also fall into the middle category.  There is no proven risk of birth defects, but we don’t have enough experience to say they are completely safe. Since these medications are newer, there has also been less time to learn about possible risks. Therefore, we might be more cautious with newer medications than with some of the older ones.

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Care For Your Mind

How should clinicians integrate mental and emotional wellness when living with a chronic physical condition? Andrea Braverman offers some insights in an interview posted on CFYM.

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DBSA

DBSA Seeks Interns for Summer 2018

The DBSA Chapters Team has openings for two summer interns this year, one based in Chicago and the other in New York City. If you or anyone you know is interested in applying, please check out the posting on DBSAlliance.org!

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Depression and Bipolar Support Alliance

bp Magazine: Get Your Hopes Up

The belief that your life can and will get better is a vital part of recovery from bipolar disorder. Luckily, hope is a renewable resource.

By Donna Jackel

Hope guides us through our darkest times. Without it, we stay mired in despair.

Hope allows us to believe that change is possible—that even in the midst of a relapse, you will find your feet again. Hope gives us the strength to get up and try again.

Hope actually has therapeutic value, says Michael Thase, MD, a professor of psychiatry at the Perelman School of Medicine at the University of Pennsylvania and director of its Mood and Anxiety Program.

“It’s long been known that when people feel hopeful they have much less risk of suicide and a better response to treatment,” he says.

But what is hope exactly, and how do you find and sustain it?

Nancy Snow, PhD, a professor of philosophy and director of the Institute for the Study of Human Flourishing at the University of Oklahoma, has written about hope as a character trait that helps us thrive. Her definition of hope: “the desire to attain a certain end and the belief it is possible to attain it.” Read the full article.

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Depression and Bipolar Support Alliance
Facing Us Clubhouse

Visit the FacingUs.org to get more tips, create your own tips, track your wellness, and connect with peers. Joining the Facing Us Clubhouse is easy and free.

Wellness Tips from Peers

Nurturing Relationships for Well-being
Relationships
The most significant thing we can do for our well-being is not to “find ourselves” or to “go within”... it is to invest as much time and effort as we can into nurturing the relationships we have with the people in our lives.

Take a Break
Employment
Don’t be afraid to talk to your boss and ask for a short break if you need one. Even if it’s only five minutes, it will help, and your boss should understand because your workplace wants you to be at your best.

Believe in Yourself
Depression
Think of all the thousands of things you’ve done, accomplished, and pursued. You can handle today.

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