20 posts tagged “bipolar disorder”

Patients at work: Member Nancy on being her own boss

Posted January 10th, 2017 by

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals.

Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.”

Can you tell us a little about yourself and your diagnosis experience?

I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that I needed to succeed broke me. My body and mind couldn’t handle it. There was never a balance of my life. I never took a break I was a workaholic. I slept just 3-4 hours a night most nights. I had as many successes, as I did years of crash and burn.  It was just hard for me to work a mainstream job. I can’t do deadlines very well, stress triggers Mania. I was in complete mania working a full-time job and going to school for 7 years of my life then in a complete depression for 8+ years as I worked each day to recapture my life. Since I had 5 times of extreme psychosis. It wears on your body. I just had to begin plans to do a 180*. I was choosing the path to the most resistant and not enjoying the ride along the way. There were many things that I was doing wrong. I needed the balance, peace of mind; love for myself and to not live in extremes.

I have a certificate in residential planning and I planned on having a career in kitchen and bath design but that is high stress and the 180* was to find that my hobbies and being an artist is more of a goal and where I should be headed now. If I could make that work and market it to make some income. Then I can kill two birds with one stone I could have my success and support myself and take care of my illness at the same time.

I need a job to where I am the boss every day there is an unpredictable nature about the illness there is not a day that goes by to where I am not making judgment calls to maintain my health. I have to take many brain breaks clear my mind. That gets in a way of a full time every day job.  So to work at my own pace is crucial. So I can work around my mind.

How did you first get into making art? What are some of your favorite projects?

I started cross-stitch at age 8 at the same age I would draw in 3rd grade floor plans of my favorite houses that we vacationed at. In high school I took drafting class. I was very into residential homes and design. Through school I loved anything design and art related and at age 12 I determined that would be my life goal, I wanted to get into homes and design the plans for them. Well that idea evolved and now the goal is to be an artist and create art for people’s lives. It took a long time to make that distinction. I guess that is part of the process of the journey.  My cross-stitch was an obsession growing up. I made over 45+ pictures most of them were gift to friends. By working with my hands and heart it was a release to use the needle and thread, very healing. Then after a while after I chased after my career for a while I realized that I wanted to get involved with other mediums so with no money for school I began to teach myself using YouTube for advice other mediums, to illustrate for cards and create paintings. Wherever my ambition will lead. I am interested in paper, wood and fabric. I am defiantly in the experimental stages, working on many different projects to see where that may lead.  Right now, I am drawing and gravitating towards architectural element and gardens.  The sky is the limit.

Where have you been able to sell your art so far? What are your plans for growing a business out of it in the future?

I was making and illustrating some cards for people around me I would go to market and sell my cards just for the experience and wow they sold like hotcakes and had some people pay $10 for one card and there were orders for batches of 12 cards for Christmas and finally I just got warn out with all the work and found better ways to market my cards. I have one idea to sell and make good money buy illustrating my cards then making copy’s at the printers then selling or making silhouettes on the Internet for Cameo cutting machine sell the rights to the company and then when people buy my silhouette on the web I get paid a percentage I liked that idea. All of this is going to take me a long while to manifest I am becoming an expert in my own field so I am gauging down the road. 

How does living with bipolar affect your creative process?

When I am in mania my mind is racing the world it is so much deeper and broader and I have so many ideas. I have so many ideas but there not concrete. On the meds I struggle with similar issues as in mania; plus to focus, concentration, comprehension, low energy. I do think clearer on the meds but the symptoms never go away. It takes much strength to break down and be in the mood to do art so I am surprised when I look over my work and see so much progress.  So maybe once a day do a little bit. It is hard when your mind is choreographing dance songs in my mind and you know how to make that happen but all the details of the work and learning everything to piece that together. I don’t have energy for that. But it goes through my mind. All I know I can do anything I set my mind too there is just isn’t enough time for it all in this lifetime. Sometimes I think that I have the illness to keep me down to earth instead of a balloon flying off into the universe I have so much internal power.

On the flip side, does the process of making art help your manage your health?

Art is passion: it is metaphysical and spiritual. It takes you places. Color, and creating: helps release your mind. It keeps me occupied, during this life we call on earth.  It take’s skill and the process of learning, growing and creating that specific look is a life long job so fascinating to find.

I can manage my health by getting to a place to where I feel at complete peace and feel like I am doing my calling in this world. I feel depressed and moody if I am not doing that. I need Art in my life.

Do you have any advice for others with chronic illnesses who wants to start their own creative businesses?

Do it for fun first for years then add the buying and selling part. That is what I am doing? I feel more prepared to sell my work that way. Do your research about the business end and start with small classes to help you understand the business world. Become and expert first and then the process will be less stress on you. Owning a Business is a risk and you want to do what you can to succeed.

Most of all love you and have some faith. There is power within your heart that is just waiting to break through. Believe in that every moment of every day. Love yourself first and foremost and love others around you. Give to them in increases the harmony. Don’t get trapped in the hole of oppression and burden, get out!! Then you can succeed in all area of life and be ready for your own business.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients at work: Member Jenny launches online craft shop on Etsy

Posted November 8th, 2016 by

 

A few weeks ago, we kicked off a new blog series about patients who have started (or are working on launching) their own businesses. We’ll be featuring some enterprising members and learning more about how they manage their health and their career goals at the same time.

Today, we’d like introduce Jenny, (jhound), a member of the bipolar community who recently opened an online shop on Etsy called OldSchoolJenny. Jenny designs cards, scrapbooks, printable journal kits and other paper crafts with a vintage flair.

When we caught up with her, she shared about her diagnosis experience, her creative process and the health benefits of working with a passion: “Having my Etsy business gives me reason to keep going. It gives me a sense of purpose and it also brings me a lot of joy. “

Can you tell us a little about yourself and your diagnosis experience?

I grew up in Southern California in a foster home. I joined the military when I was 23 and met my husband who was also in the Navy in 2002. We lived in San Diego for the first five years of our marriage and moved to Michigan when we both got out of the service in 2006.

My first breakdown occurred in 2004 a year after we got married. I had a severe depression that involved some serious paranoid delusions (psychosis). I was hospitalized for over six weeks and then medically discharged. My initial diagnosis was major depressive disorder with psychotic features. Although I believe I had my first mania in 2005 while my husband was deployed, it wasn’t until I had a severe mania that included religious delusions in 2008 that I received my diagnosis of bipolar I with psychotic features.

I finished college after we moved to Michigan. I have a bachelor’s degree in psychology and a master’s degree in library and information science. At various points in my life I thought that I either wanted to be a counselor or a librarian but right now I am happy working on my Etsy business. My husband just graduated from Central Michigan University in May. We have recently relocated to Adrian, Michigan for his first engineering job.

We do not to have children at this point although it is possible that we may adopt in the future (you never know). However, we treat our dogs like our children. We have two basset hounds that we adore and who keep us very busy.

How did you first get into crafting and digital design? 

I have loved crafting all of my life. My favorite activities in school were always the artistic ones. I still look back with fondness on finger painting in preschool. As an adult I continued crafting when designing and constructing cards, especially for my husband, Chris.

I started a wedding scrapbook shortly after we got married but it took me several years to complete because I was such a perfectionist. It wasn’t until I bought a complete scrapbooking kit at a yard sale last summer that I was able to let go of the perfectionism and just let my creativity flow.

As for digital design, I had a copy of Photoshop that I used extensively while Chris was on deployment. Creating digital collages was one of my favorite ways to escape the loneliness I felt while he was away. Now I just love creating digital art journal pages for people to use in their crafts.

What are some of your favorite things you’ve made?

One of my most favorite things that I have made is a framed scrapbook page that I created for Chris’s graduation. It includes some of his graduation photos and some quotes from his family members about how proud of him they are. I think it came out very nice.

I also really like the Halloween junk journal that I made for my Etsy shop. It includes lots of vintage images that I found that all include black cats. I am attached to it because it is the first of hopefully many junk journals that I will be making.

Something else I made that I really like is a scrapbook that is “all about me.” I enjoyed documenting my life in this manner and I feel that it has become a keepsake for me.

What’s your creative process? What (or who) inspires you?

Inspiration strikes in different ways. Sometimes I am inspired by other people’s creations that I find on Etsy or on Pinterest. Other times I am inspired by positive affirmations and quotes. Sometimes I can just look through my materials and find a scrap of paper that inspires me. I am also inspired by vintage images.

What has been the most challenging part of starting your own business while living with bipolar?

I think it may be having my level of commitment waiver with my mood fluctuations. Having bad days when I feel uninspired and some days when I fear that having a personal business may be a mistake even though most days I feel grateful for the opportunity that it provides.

On your Etsy profile you say that your “biggest desire is to bring art into other peoples lives and to inspire others to live their best possible life.” Can you talk a little more about this?

My initial projects involved positive affirmations because they inspire me/help me to think more positively. I was hoping they would help others as well. One of my goals is to make a mental health journal and other tools to help people with mental illness. I have seen some examples of mood journals, etc. on Etsy, but I plan on making mine not only functional but artistic at the same time.

How does your art affect your own life and your condition?

I feel that my art really helps me and helps my condition. First it helps me to stay positive and gives me something productive to do. Having my Etsy business gives me a reason to keep going. It gives me a sense of purpose and it also brings me a lot of joy. So far I have been very lucky in that I haven’t had to deal with a serious depression since opening my shop. I am hoping that when it happens I will be able to rise above and keep operating my shop. If not, it is very simple to put my shop on vacation and take a break if needed.

Do you have any advice for others with chronic illnesses who want to start their own creative businesses?

My only advice is to go for it. Don’t put it off until everything is perfect. It will never be the perfect time to start a business. Etsy is very inexpensive and it’s OK to make mistakes. I made some mistakes when I first started but it was all easily remedied.

If you do decide to go for it, my other advice is to use social media for marketing. Don’t just share information about your product but share information about yourself, too. People want to know about the creator almost as much as they want to know about the product, especially when it comes to creative work.

 

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Patients at work: Member Ellen on launching her own clothing line

Posted October 25th, 2016 by

PatientsLikeMe members often talk about how they’re more than their diagnosis. They’re patients, but they’re also people, with complex lives, families, hobbies and careers.

Today, we’re kicking off a series of blogs about that last one — working with a chronic condition. We’ll be featuring some enterprising members who have started (or are working on) launching their own businesses, and learning more about how they manage their health and their career goals at the same time.

First up is Ellen (edayan), a member of the bipolar community who designs clothes for curvy women and runs an online dress shop called Tiger Lily. When we caught up with her, she shared about her passion for designing, how living with a mental illness affects her creative process, and her inspiring message to women:

“I want women to feel good about who they are right now so they don’t miss out on living a full life … Life is too short for feeling you’re not good enough.”

 

Tell us a little about yourself. How did you first get into designing clothes?  

I first started sewing clothes for my daughter when she was a baby. She became quite the tomboy and I couldn’t even bribe her to wear the little dresses I designed for her, so I started selling them. I was so happy making clothes for children that I started my own children’s clothing and costume design business, but it was really more like a hobby than a career. The most popular thing I made was a retro boiled wool coat. Each one was different.

Tiger Lily’s message is “Love yourself — Now.” Can you talk a little about this and how you’re trying to inspire women through your clothes?

I gained a lot of weight on psychiatric medications for my bipolar disorder, which I’ve not been able to lose. I was so embarrassed and ashamed that I started hiding out at home. I didn’t want anyone I knew to see me. I didn’t appreciate the fact that I was still beautiful — just different. The world doesn’t treat you nicely if you have a mental illness or if you are not thin. I had two strikes against me, I thought, so I hid. During that time, I lost out on all kinds of important relationships and opportunities. Waiting until you can get yourself skinny isn’t a good reason to lock yourself away. I want women to feel good about who they are right now so they don’t miss out on living a full life. My message is to embrace your body, mind and spirit just the way you are. Life is too short for feeling you’re not good enough.

What’s your creative process like? What are some of your favorite pieces you’ve designed?

I actually like to sketch new designs when I am feeling a bit depressed. The depression slows me down and makes me more careful and practical. So, in a way, depression can be used to my benefit when it’s not too severe. After the depression cycle clears, I go back to the design and infuse it with colors and textures and some fun. Here is a sketch I made of a skirt and top that I constructed with some changes from the original idea. This ensemble will show on the runway in Phoenix Fashion Week in a couple of days! I’m really proud of it. Here are some of my original designs…

What has been the most challenging part of launching your own business, and what’s the most important thing you’ve learned along the way?

The most challenging part of starting my business is keeping the faith even when things don’t happen the way I’d like. I encourage myself to keep going and not get too frustrated with setbacks. Depression can be paralyzing at times. Usually, I can keep working through it, but sometimes I have to cross everything off my list for a couple of days until I’m well enough to function again. Having an online business is great because it’s flexible and I can “crash” when I need to and not lose customers!

The most important thing I’ve learned is to be authentic in everything I do. I don’t pretend to know everything about fashion, life or anything else. I am just me. But that is enough, and my customers want to connect with a real person. I guess the next most important thing is that I have a wonderful family and friends who are there waiting to help. I just have to ask.

You’ve said that designing clothes has been “such a big part of my recovery.” How has your art helped you manage your condition?

Designing and making clothing is fun, but it’s also challenging. It often distracts me from thinking about myself and the fact that I feel really, really bad inside a lot of the time. When I create something beautiful I get such a big thrill. It makes me happy for days. All of me goes into these designs — not just my happiness and imagination, but also my sorrows and tears.

When I get better at designing, I think my personality will become even more evident and people will see who I am in the colors and lines of my work. What I spend my time doing has always felt like the biggest part of my identity. Right now, I am a designer. I am not a mentally ill person, or a patient or a social services case number. I am a woman with talent and skills, and I am using these strengths to be successful. I accept that I experience severe emotional pain — it’s a fact of my life. I do everything I can to minimize that, but being creative isn’t just therapy or a way to “manage my condition.” Designing is a serious business for me — I am banking on it.

What are your future plans for Tiger Lily? Any career goals beyond this?

In the future, I would like more of the inventory in my shop to be my own work. I am especially interested in making one-of-a-kind items. So, I am planning to do more designing and less wholesale buying as time goes forward. I would like to open a brick-and-mortar store someday. I guess I’m trying to prove to myself that I can achieve success with this before investing in rent and utilities and store furniture, etc. I would like to continue donating to organizations that create new opportunities for people in recovery from mental illness and a host of other challenges. I’d like to create a fashion show of my own next year, and to keep developing new design skills.

But honestly, my goals are to grow a more courageous heart, to use my imagination in ways that light up the world, and to go as far as I can with what I’ve been given. I want to do all of these things despite the fact that I have a mental illness.

Do you have any advice for others with chronic illnesses who want to start their own businesses? 

Yes! Aim high. Don’t allow your fears to drown you. Set up all the safety nets you’ll need, but don’t think small because you have limits. You may discover that working hard on a project you believe in gives you energy, improves your mood, and helps you grow. If people tell you that your illness is the reason you can’t accomplish anything, find new people. Keep learning as much as you can and never, ever give up.

 

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World Bipolar Day 2016 – Share how you’re #MoreThanADiagnosis

Posted March 30th, 2016 by

“What am I in the eyes of most people – a nonentity, an eccentric, or an unpleasant person – somebody who has no position in society and will never have; in short, the lowest of the low. All right, then – even if that were absolutely true, then I should one day like to show by my work what such an eccentric, such a nobody, has in his heart.” – Vincent van Gogh

Today, March 30, 2016, is World Bipolar Day, celebrated on the birthday of artist Vincent van Gogh, who’s believed to have had bipolar disorder. Sponsored by our friends at the International Bipolar Foundation (IBPF), this year’s theme, “More Than A Diagnosis,” focuses on how people with bipolar are many things beyond their condition. Check out the IBPF’s page for resources and ways to get involved.

And if you’ve seen the conversations with new member Paul in the last month surrounding the release of his debut feature-film, Touched with Fire, then you’ve seen firsthand how someone living with this condition is capable of living a successful life full of creativity.

Check out the forum where members have been sharing how they’re #MoreThanADiagnosis. And don’t forget to connect with the more than 10,000 members living with bipolar disorder in the mental health and behavior forum on PatientsLikeMe.

 

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Touched with fire: Reframing the dialogue of bipolar

Posted March 10th, 2016 by

We’ve talked a lot with new PatientsLikeMe member Paul, diving into issues like getting a diagnosismanagement and coping, and overcoming stigma.  Now, Paul is sharing how he’s trying to change the conversation about bipolar through his debut feature film, Touched with Fire.

Here he talks about framing Touched with Fire as a love story because in a condition defined by emotional extremes, he says that having those extremes take on the form of love “outshines any clinical label or diagnostic book that you’ll never see it in the same way again.”

Watch how Paul is changing the dialogue around bipolar:


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Touched with fire: Eliminating the stigma of bipolar

Posted March 3rd, 2016 by

PatientsLikeMe member Paul is a filmmaker who’s harnessed his bipolar into creativity, most recently in the debut feature film, Touched with Fire, which he wrote, directed, edited and scored himself. In the last month, we’ve spoken with him about his diagnosis and what he does to cope. Now he’s opening up about fighting the stigma that so often accompanies this condition.

He stresses the importance of people being able to see through the eyes of a person living with bipolar because, “they would see the beauty of it and wouldn’t look at us that way anymore.”

Watch what else Paul has to say:


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Touched with fire: A meaning behind the suffering

Posted February 18th, 2016 by

We’ve been talking with new PatientsLikeMe member Paul, whose debut feature-film, Touched with Fire – inspired by his experiences living with bipolar – opened last week in select theaters. 

For Paul, the road to diagnosis was more like being on a rollercoaster. Years of using marijuana seemed to stimulate his creativity at film school, but culminated in the manic episode that would shape the rest of his life. His diagnosis was not the divine revelation he interpreted it as, but the triggering of a lifelong disease: bipolar disorder.

Here’s how Paul describes this time in his life:

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Meet Paul, an artist “touched with fire”

Posted February 11th, 2016 by

“I’m a filmmaker, husband of my NYU film school classmate, father of two children and bipolar. Of these labels, the one I’m certain stands out in your mind is bipolar – and not in a good way.”

Being bipolar is not something that new PatientsLikeMe member Paul has ever tried to hide. On the contrary, he sees it as a gift that has fueled his creativity. Paul has written, directed, edited and scored a feature-film debut inspired by his experiences with bipolar disorder. Touched with Fire, starring Katie Holmes and Luke Kirby, opens tomorrow, February 12, 2016, in select theaters.

Paul received his diagnosis at age 24 when he thought a manic episode was a divine revelation. What happened after that illuminated the path his life would take.

“I was thrown into a hospital, pumped full of drugs and came down only to be told that I wasn’t experiencing anything divine; I just triggered a lifelong illness that would swing me from psychotic manias to suicidal depressions with progressive intensity until I would most likely fall into the 1-in-4 suicide statistic – unless I took my meds, which made me feel no emotion.”

Refusing to accept what every medical text seemed to tell him – that is, if he stayed on meds, he could live a “reasonably normal life,” he discovered Kay Jamison’s book, Touched with Fire. It’s the first medical text that connects bipolar and artistic genius, profiling some of the greatest artists in history, including Vincent Van Gogh, Lord Byron and Virginia Woolf.

“For the first time, I heard words, shining right through every medical book’s thick printed clinical ink, describing something I could be proud to be. I was like, Yeah, that’s what I am. I’m ‘touched with fire.’

Just as it would be destructive for him to deny “all four seasons of the bipolar fire,” he says that “it would be unwise for a doctor to deny that on those manic summer nights, when we look out our hospital windows, we can see the stars pulsing spirals of fire across the sky, as God lifts the veil and unfolds the entire universe before our eyes.”

If doctors and patients partnered better and trusted one another, Paul asks, “How much more receptive would a patient be to treatment if the patient was told that the treatment was to nurture a gift they had, instead of terminate a disease they had?”

He often references a quote by Vincent Van Gogh, who conceived the beloved “Starry Night” painting while gazing out a sanitarium window: 

“What am I in the eyes of most people? – a nonentity, an eccentric, or an unpleasant person – somebody who has no position in society and will never have; in short, the lowest of the low. All right, then – even if that were absolutely true, then I should one day like to show by my work what such an eccentric, such a nobody, has in his heart.”

And so, like a true artist, Paul is using his gift – that fire – to change the way people think of bipolar disorder and to encourage others “touched with fire” to harness the power of their gift.

Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe.

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The highs and lows of bipolar disorder

Posted October 7th, 2015 by

Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. 

Did you know bipolar disorder is a worldwide condition?

  • In Australia there are around 238,957 people with bipolar disorder.
  • In the UK: 723,248 people.
  • Germany: 989,095
  • Canada: 390,094
  • Iran: 810,038
  • India and China, each have 12 – 15 million people who are bipolar

By the numbers…

  • 5.7 million: number of adult Americans affected by bipolar disorder (or 2.6% of population) today
  • 25: average age for beginning of bipolar disorder
  • 50/50: men and women get bipolar equally
  • 3X: But women are 3 times more likely to experience rapid cycling with B.D.
  • 6: Bipolar disorder is 6th leading cause of disability in the world.

For more facts about bipolar disorder, visit the full infographic. And don’t forget to share your experiences with bipolar disorder with the PatientsLikeMe bipolar community.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2

Posted June 14th, 2014 by

Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member and how she’s learned about the value of sharing the “whys” of her bipolar II.

If you’ve been following along, keep an eye out! We’re going to post the third and final part of her interview in July. Miss the first part? Read that here.

The benefits of spousal support

My husband of thirty-seven years, Jim, is my strongest and most dependable support. We met forty-two years ago teaching high school in New York State. I was the single mother of two boys, four and five, who are Native American and Black on their biological father’s side. Jim was a Catholic priest. The boys soon adopted him as a father figure. We married five years later and moved to Maui. Jim adopted Mike and Mark, and later, we had James and Kalea. Before our marriage, he had already helped me through one suicide attempt.

Over the years, we have always felt we were destined to be together. I can honestly say that in forty-two years, he has never even raised his voice to me. Because of abuse in childhood and my first, brief marriage, I could not have borne it. During our marriage, he has seen me through three other suicide attempts and multiple ECT treatments.

He knows my moods and when they change. During depression, he is my cheerleader, safe harbor and my memory, celebrating the loving, talented person he believes me to be, and reminding me of all my accomplishments. When I am in the pit, he makes certain I know he is with me, but never tries to force an affection frozen within me.

As I worked the last six months to survive without my retiring psychiatrist of thirty-seven years, I have become more aware that Jim is the center of my support and always has been – not my doctor. As this realization grew, our relationship deepened. I thought I knew what a loving marriage was. However, our current relationship is stronger and more beautiful than ever. He is the one person I know who, while having no real experience of being bipolar, knows what to say, how to provide safety and strength, and how to let go when I am able to enter life again.

Support from the members of PatientsLikeMe

After ignoring the other members of PatientsLikeMe for the first few years of membership, I felt compelled to respond when several people commented on my InstantMe daily entries. I had mentioned the difficulty of finding a therapist to replace my retiring psychiatrist, and one member in particular wanted to help me. She lives in a major city and suggested I go to the nearest hospital associated with a medical school where there would be residents available for counseling. I explained here on Maui, we raise pineapples and sugar cane, and most jobs are related to the tourist industry. Hawaii is expensive and lacks mainland amenities such as many doctors from which to choose, support groups for mental health, and large shopping malls (which seem to be a priority for would-be residents).

So Kitty became my sounding board, my comrade-in-arms in the challenging world of bipolar II, and most of all, my friend! I discovered I was often more open to what she had to say than when my doctor said the same thing. Being put together very much like me, she had a perception of a situation I might find perplexing. She cut to the heart of the matter. Once, she suggested a different take on the puzzling behavior of a family member, and after following her advice, the relationship was mended.

She is funny and optimistic despite many problems, and with pretty much daily communication, we manage to keep track of each other’s ups and downs. It raises my damaged self-esteem to be able to encourage Kitty and others. I have learned that friends and family, although well-meaning, are often clueless as to the nature and future of being bipolar. Seeing from PatientsLikeMe members that this is pretty much a constant, I’ve been more at peace and even forgiving toward comments such as, “I’ve tried to help you, but you don’t make any effort,” or “Hasn’t that doctor found the right pill yet?”

Members of PatientsLikeMe also assured me by the tone of some of their entries that I am entitled to lose hope and to want to – and actually do – give up occasionally, and even be quite irritable! None of us are saints. We often feel like the last soldier standing in a curious and never-ending war – and that’s OK!

I could have used their wisdom and comfort years ago, but I’m so grateful I have access to them now. Thank you, staff of PatientsLikeMe, for making that possible.

Using patient charts and InstantMe tools

As for the charts and InstantMe tools, I am making more use of them as time passes. The charts are very helpful – and surprising – since my memory has been seriously impaired by depression. I find myself wondering, “How was it last summer?” and then can go to the charts and see immediately how I felt. Remembering the events of those months, I am often glad to see I handled things well, or sometimes, that I struggled terribly and this struggle accounted for the relationship that fell apart at that time. Seeing and using the daily InstantMe e-mail is a reminder and little push to work again.

Now that I have connections with other people on PatientsLikeMe, I find myself always filling in the comment section on InstantMe, something I originally never did. This is because I now realize the value in sharing the “whys” of my InstantMe selection. I get feedback from others and formulating a reason for my choice helps clarify it in my mind.

Reading past comments of my InstantMe, I’ve been able to spot triggers that appear again and again. I learn what feeling and experiences should be red flags for me. Often having questions or doubts about a medication, it’s so helpful to be able to find out what others have experienced with it. After all, my doctor isn’t taking it. Other members of PatientsLikeMe are!

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I

Posted May 9th, 2014 by

Eleanor and her husband, Jim

 

We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since.

She shared about her journey in a three-part interview series, and we’ll be posting one part each month. In this first edition, Steubenville talked about how twinkling Christmas tree lights gave way to thoughts of loneliness, how life in a convent seemed like the right plan, and how she learned to recognize oncoming depression and mania. Read on for her full interview and keep an eye out for part two in June!


Navigating the ups and downs of a diagnosis

Although I was diagnosed with bipolar II well into adulthood, I feel I experienced it very early in life. On a particularly joyous Christmas Day when I was about twelve, as the dusk fell early on a typical western New York winter afternoon, I stood alone, gazing at the twinkling Christmas tree, and suddenly thought, “This is how it will always be: cold, and dark, and lonely.” This is symbolic of the way I may still cycle during a single day, many times for no apparent reason. At that time, even on happy, fun-filled days, something I may have heard or seen might plunge me into a very dark place and hurl me into a struggle to hold back the tears.

Spiritual highs, melancholic music, lyrics of hymns and the all-encompassing silence of five years in the convent seemed to fit me like a glove. Bouncing from the precious fellowship of the sisters to sad reflection on the passion of Christ seemed normal to me, and I felt I had found the life I’d always craved. Later, when one of my four children whined, I’d reply, “Remember, the world is cold and life is sad,” words I’d often sung as a nun and always felt were such an apt description of life.

Besides the frequent cycling, I’ve experienced other unwelcome features of bipolar such as periods of irresponsible spending and lack of judgment in relationships. So often I found myself standing aside and observing a self who repeatedly cast aside her values and self-pride to pursue an elusive and imaginary gratification.

It took years of therapy and the patience of a saintly psychiatrist for me to begin to understand I had frequent mood shifts caused by mixed up brain circuits – and not existential, undisputable thoughts. First, the universe was amazing, full of possibilities, and anyone who disagreed was to be pitied. Then, suddenly, all roads led to hell. I was totally worthless and no one valued me. I could prove it!

My psychiatrist of thirty-seven years, Jon Betwee, helped me understand that when I was hypomanic, I could not remember depression. When deep depression took over, I was convinced all was lost forever, and the best way to spare others and myself further pain was to die. I tried – four times.

Now, when I see myself feeling a little too “high,” and I think I am funny, have brilliant ideas to share, and life cannot move fast enough, I tally these signs as being hypomanic and put the brakes on. No, I am not happiness and wisdom personified. I put in place some deep breathing, a quiet time of reading, or long conversations with my supportive, knowledgeable husband. Triggers can be too hectic or too frequent and demanding. Eliminating some social gatherings and frenetic activity helps.

I now recognize the approach of depression when I re-play sad and tragic DVDs, cry over everything or imagine hidden and antagonistic messages beneath the conversation of family and friends. Triggers may be letting myself get very fatigued, ruminating about past hurts, making mental lists of all my mistakes and weaknesses. Now I make myself get up, start a task that will absorb and re-direct my attention, and review “What would Jon suggest I do?”

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National Depression Screening Day and National Bipolar Awareness Day

Posted October 10th, 2013 by

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As part of Mental Illness Awareness Week, today is both National Depression Screening Day and National Bipolar Awareness Day. It’s all part of a larger effort to raise awareness about the mental conditions that affect the lives of millions of people around the world.

So what are the stats on depression?[1]

  • Depression affects as many as ten percent of all people in the United States, an incredible 30 million people
  • One out of four young adults will experience a depressive episode by age 24
  • 10% to 15% of all depressions are triggered by other medical conditions (such as thyroid disease, cancer or neurologic problems) or by medications

Here are the facts about bipolar disorder:[2]

  • More than 10 million Americans are living with this condition, which is characterized by extreme mood swings and intense emotional states
  • More than half of patients are diagnosed between the ages of 15 and 25
  • Bipolar disorder affects men and women equally

But at PatientsLikeMe, we know that patients aren’t just a statistic, and that facts don’t tell the whole story. Your journey is unique, and this is why more than 15,000 PatientsLikeMe members with depression and more than 4,000 with bipolar disorder are sharing their stories with the greater mental health community and talking about what it’s actually like to live with these two conditions. In the past, you told us what depression feels like, and today, we are raising awareness for depression and bipolar disorder and learning to live better. Click here to sign in and share your experience today.


[1] http://www.mentalhealthscreening.org/info-and-facts/depression.aspx

[2] http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Bipolar1/Home_-_What_is_Bipolar_Disorder_.htm