DBSA e-Update July 2018 See All Issues Sign Up


DBSA’s Listening Tour Begins in New York City and Dallas, TX

How do you define wellness? Is it the absence of symptoms? Can you still enjoy wellness while experiencing challenges in your life?

SAMHSA provides a helpful roadmap by identifying eight dimensions of wellness, summarized below.

  1. Emotional—Coping effectively with life and creating satisfying relationships
  2. Environmental—Good health by occupying pleasant, stimulating environments that support well-being
  3. Financial—Satisfaction with current and future financial situations
  4. Intellectual—Recognizing creative abilities and finding ways to expand knowledge and skills
  5. Occupational—Personal satisfaction and enrichment from one’s work
  6. Physical—Recognizing the need for physical activity, healthy food, and sleep
  7. Social—Developing a sense of connection, belonging, and a well-developed support system
  8. Spiritual—Expanding a sense of purpose and meaning in life

How do these SAMHSA dimensions align with what “wellness” means to a health care system that tends to focus on symptom mitigation? When you think of wellness, do you consider aspirational dimensions or are you content with the status quo? (And why all these questions?)

Transforming the definition of wellness is a major initiative for DBSA. We have explored the topic in a variety of campaigns through the years, including Positive Six and The Year Of Thriving. While previous campaigns’ emphasis was on personal engagement, our current campaign, Well Beyond Blue, focuses on systemic health care change that supports person-centered treatment outcomes.

To be effective, this campaign requires community involvment. The first phase surveys the DBSA community and asks it to identify the most important treatment outcomes beyond symptom mitigation. Some of the survey options may delight you because you think, “Finally somebody gets it.” Others may be aspirational outcomes that you had never considered because you didn’t think they were possible. Regardless—obvious, motivational, or aspirational—the entire community needs your feedback.

This feedback will form the basis for an externally-led FDA patient-focused drug development meeting on November 16, 2018, in Silver Spring, MD. We invite and encourage everyone to attend in-person. This is your opportunity to tell tell pharmaceutical companies, medical device manufacturers, and the FDA what your treatment preferences are. These meetings, attended by FDA decision-makers, have the potential to change clinical trials to reflect outcomes you want from treatment—and encourage innovation around developing new treatment options.

In early August, DBSA will email the survey and meeting registration link. Please consider taking the survey and attending the meeting in-person. You can also attend the meeting via live web feed. By pooling our collective input, we become the catalyst for new and innovative treatment research that supports true wellness and health.

For more information on this November meeting, contact Phyllis Foxworth, Vice President of Advocacy, at pfoxworth@dbsalliance.org.

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Life Unlimited
Dr. Eleora Han

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: Dr. Eleora Han

The best way I can describe my experience with bipolar is that it is like the movie A Beautiful Mind—minus the paranoid schizophrenia. The loss of insight and connection to reality were complete, and I found myself acting in ways that were unrecognizable to myself and those around me. I also began to experience extreme moods, some of which appeared beautiful, but which ultimately hid a vast darkness. 

The symptoms began innocently enough: although I wasn't getting much sleep, I began to feel as if I didn't need it anymore. My mind was “on” all the time and I was extremely productive in all manner of ways. Life held an incredible amount of meaning: colors seemed brighter, songs sweeter, and feelings of ease permeated my marrow. But soon, time began to move too quickly, as if I were on a crazy carousel. Ordinary encounters with predatory individuals I normally wouldn't have spoken to held strong cosmic significance. My emotional responses were at odds with those of loved ones around me. I began to experience symptoms of hypersexuality.

Left undiagnosed and untreated, bipolar will consume you alive. It destroyed my marriage, and I was left with the aftermath, alone. A year later, I discovered lithium. Taking it was like waking from a dream, only to find my identity, dreams, and everyone I had loved (and held dear) gone. I tried to restore relationships that had been broken, but I learned that sometimes they can't be. These are the brutal truths of bipolar: the dark point you must come back from. 

I came out of the darkness a different person, one with a renewed sense of purpose and hope. I was alone, and yet not alone. People who didn't know me walked with me through the darkness. Their kindness and compassion moved me. And although I had fallen, I learned how to pick myself back up.
Time reveals greater truths. It’s like flying a plane: when you’re close to the ground, all you can see are the immediate details. And yet the farther away you get, the broader your perspective is on what you see and understand. My own journey with bipolar has been like this. When I looked out at first, all that I saw was destruction. And yet as more time passed, I saw the greater truths of beauty and resilience. Of grace and forgiveness. Of love, what it is, what it means—and its power to restore and heal. 

It is with this spirit that I now write to share all that I have learned: that darkness will happen in life, that bipolar can be an awful monster to defeat (and one that must be continually fought back each day). But, through this process, something significant can be found—something life-giving, solid, and real. There is hope. Let’s walk through this life, and all the pain it can bring, together.

Dr. Eleora Han is a licensed clinical psychologist. Visit her at http://www.eleorahan.com/blog where she shares her perspectives as a clinician, patient, and individual with bipolar.

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Michael Pollock, Chief Executive Officer, DBSA
Michael Pollock
Chief Executive Officer, DBSA

Note from Michael Pollock, Chief Executive Officer 

Dear DBSA Friends:

As I enter my second month with DBSA, I find myself making more concrete connections between the work of the staff, chapters, and other important partners and the long-term strategic goals for the organization, including:

  • identifying additional services for individuals with mood disorders;
  • increasing DBSA’s visibility and footprint nationally;
  • reducing stigma around mental health conditions; and
  • defining and reaching influencers with the potential to improve the environment for people with a lived experience

I’d like to call out one of the important steps we are taking this summer with respect to reaching key influencers: our upcoming, externally led patient-focused drug development meeting with the Food and Drug Administration—and the opportunity for individuals to offer feedback in advance of and during this event. 

The externally led meeting will occur on November 16, 2018, in Silver Spring, Maryland, and will include representatives from the FDA, pharmaceutical and device companies, and individuals who live with mood disorders.  The focus is for those of you who experience mental health conditions to share your experiences on wellness, what that means to you currently and, equally importantly, what you’d like it to mean in your life in the future.  Your feedback has the potential to change the kinds of clinical trials developed in the future to reflect what you are seeking, and to encourage innovative new treatment options.

To get started, be on the lookout for a survey from DBSA in early August. Whether you can attend the November meeting or not, your survey responses will serve as an important way for your voice to be heard. For more information on the externally led meeting in November, contact Phyllis Foxworth, Vice President of Advocacy, at PFoxworth@DBSAlliance.org.

Thanks in advance for your participation!

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Depression and Bipolar Support Alliance

Advocacy

The idea of starting a movement often feels intimidating, and knowing where to begin can be overwhelming. Movement-building isn't an individual undertaking: it takes many dedicated people to push forward a movement that will create positive and lasting change.

A good place to start is with the folks who are working on the same or similar efforts. Finding out who—whether individuals or organizations—is already engaged is useful in many ways. Bringing like-minded groups together through collaboration, coalition-building, and networking strengthens any movement.

Identifying the unique sets of tools and resources each collaborator brings ensures that important aspects of the movement are being covered, and it helps identify what gaps need to be filled. Networking also helps identify individuals or groups that have the capacity to fulfill unmet needs. It also avoids wasteful duplicative efforts in time and resources, and the “stepping on toes” that may cause conflict between organizations and interfere with the overall movement.

DBSA Advocacy has a long history of collaboration and coalition-building, both internally and externally. One example is participation in the Parity Implementation Coalition in Illinois, which just celebrated a massive legislative victory in May.

DBSA is advancing coalition participation by building state Grassroots Organizations (GOs). These volunteer organizations tap the talents and skills of volunteers who want to raise the voice of the lived experience to bring about positive change. To learn more about DBSA's movement-building and advocacy, to find effective tools and resources, and to become involved, contact DBSA at Advocacy@DBSAlliance.org.

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DBSA Chapters

Starting a DBSA Chapter

The Chapter Relations department is offering a free webinar on how to start a DBSA chapter in your community. DBSA chapters are independently incorporated affiliates of the national office that provide local support to their communities through peer-facilitated groups and educational programs. The majority of DBSA chapters are found and led by peers just like yourself!

To learn more about chapters and how they can help you on your journey towards wellness, join us on Thursday, August 23, at 7:00 p.m. Eastern Time for our Starting a DBSA Chapter webinar. Register online at: https://cc.readytalk.com/r/a4u80ykomejv&eom.

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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

I have schizoaffective disorder, and I was recently diagnosed with seizures. I was also given a diagnosis of Psychogenic Nonepileptic Seizures. I know the brain is a complex thing. How are those things related?

In general, we use the word “seizures” to describe what people experience—sudden spells when someone loses awareness or becomes disoriented. We use the term “epilepsy” to describe an electrical pattern in the brain—usually diagnosed by an electroencephalogram or EEG. Not all seizures are due to epilepsy, and not all electrical epilepsy in the brain results in a seizure.

People with mood disorders are more likely to experience seizures of both kinds—seizures that are due to epilepsy and seizures that are not. And it seems that the relationship flows in both directions: having a mood disorder increases the risk of seizures, and having seizures increases the risk of a mood disorder. We understand only a little about the specifics of those relationships. For example, epilepsy in the temporal lobe of the brain may be more strongly linked to mood disorder or mood changes. You’re certainly right that the brain is a complex thing!

Some of the medications used to treat bipolar disorder, like lamotrigine or valproate, were originally developed to treat epileptic seizures. That is more evidence of the relationship between mood disorders and seizures. But, again, it is complex: not all anticonvulsant medications (medications for epileptic seizures) are effective for the treatment of mood disorders.

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Depression and Bipolar Support Alliance

DBSA Recognized as a Top Nonprofit

DBSA was recently honored as one of Charity Navigator's top organizations supporting suicide prevention and mental health. Charity Navigator is the nation's largest evaluator of charities and performs objective, unbiased assessments of over 9,000 charities in the United States.

It is a testament to the work being done by staff, volunteers, trained peer specialists, and all who are part of our alliance. And while we take this moment to recognize the honor, we know we cannot stop providing hope, help, support, and education to improve the lives of people who have mood disorders—work that is made possible by people like you.

Make a gift to the Depression and Bipolar Support Alliance today. Honor this recognition from Charity Navigator, and support wellness for people living with mood disorders.

Your gift directly supports education, programming, and advocacy that reaches three million people every year (and that’s a number we want to continue increasing). A donation today will help:

  • cultivate our in-person and online peer support network for people with lived experiences;
  • maintain a toll-free referral service for peers and their loved ones;
  • create online and print educational resources that make wellness tools more widely available;
  • provide practical and emotional support for parents and caregivers of children living with mood disorders;
  • advocate for patients' rights, improved access to affordable mental health care, and innovative treatment options; and
  • much, much more.

Give today to move our important work forward, and to increase your impact on the lives of the millions of Americans living with mood disorders.

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Depression and Bipolar Support Alliance

bp Magazine: Living with Bipolar: Is Self-Care Selfish?

For some, it is challenging to appreciate the difference between “selfishness” and “self-care.” Read the 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

All or Nothing
Bipolar Disorder
Do something. Balance. Even if it’s just five minutes, do something to make positive change. This is empowering and builds self-esteem.

Hanging on Is Its Own Reward
Perseverance
Hanging on to something greater and higher can give you a better sense of self-worth. The path can be treacherous, but with each step climbing up the mountain you get a greater view from above.

Keep It Simple
Depression
Sometimes it is more helpful for me to write a “I have done list” than a “to do list.”  Seeing all you have done will give you more motivation to keep moving forward, rather than seeing all the things that haven’t gotten done yet.

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