26 posts in the category “Bipolar disorder”

Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

Posted February 15th, 2017 by

Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings.

Keep reading to learn how he copes with stigma and the one thing he wishes people understood about PTSD.

Can you tell us a little about yourself? What are you passionate about?  

I was born in Seattle WA, and my family moved to Alaska where I grew up. I joined the Army when I was 19 years old and went to my first assignment at Fort Polk, Louisiana. I spent the next 22 years in the Army. During my time in the Army, I was stationed in seven different locations including Germany. I had five different deployments of varying lengths with three combat, and two peacekeeping. I received a Purple Heart as well as many others in my platoon during my Iraq tour for being wounded under enemy fire. I retired in 2014 and have one daughter who is 11 years old.

I am passionate about music and I play the electric bass guitar for the church that I attend now here in NY. I have played guitar since I was 8 years old and have been playing bass guitar about 12 years. I’m also passionate about family, church community, and raising my daughter.

How has PTSD affected your life? What’s the most challenging aspect of your diagnosis?

PTSD affected my life in a big way in my marriage. It was my then wife who noticed the differences in me and encouraged me to go get help. I finally went after struggling with the symptoms and believing that I didn’t have it and I was strong enough to forget the things I had been through.  Once I knew that I had PTSD and was diagnosed, then I started getting help for even more things that I was struggling with that needed to be addressed.

The most challenging aspect of my diagnosis is being in touch with my feelings. I would tend to block out my feelings and hide them deep inside and put on a false persona because I was scared. I still struggle with this today and have so much support helping me to make it through this.

How do you cope with stigma? 

I believe there should be a law against stigmatizing those of us with PTSD and other mental illnesses. I cope with stigma by not talking about it with those that stigmatize, that don’t understand it, because they already have their views and I don’t like to confront people. I believe the stigma is a real thing and when I see it makes me angry and upset. People are going to do what they are going to do and I just don’t want to discuss issues with them when they won’t understand it. Basically, I use avoidance to deal with stigma.

What’s one thing you wish people understood about PTSD?

I wish people understood that PTSD is not just soldiers whining and complaining about struggles in life. We all have those, but when you have PTSD you are dealing with a 24 hour, 365 days a year illness that is a constant struggle.

What advice can you give others who are struggling with PTSD? What do you find most helpful?

The advice I would give others is to have a support team to help you. Find a psychiatrist, and a psychologist, for those that don’t already have those. Those are the two most important people that will help you through those real hard times when the symptoms are overwhelming.

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Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

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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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Meet Laura from the PatientsLikeMe Team of Advisors

Posted December 22nd, 2016 by

 

Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.”

Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions.

What gives you the greatest joy and puts a smile on your face?

Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of agony of the mind, so that their friends won’t leave them, or so that they can keep their jobs. Living with bipolar disorder means constantly proving to the world that I am capable and worthy, that I am more than a bag of symptoms I constantly try to keep behind my back. I have been pretending to be OK for so long now that sometimes I don’t know where the pretending ends and my true self begins. I believe that education is KEY in bringing an end to stigma. Speaking openly about something lessens the fear and misinformation surrounding that thing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Bipolar disorder is an illness of opposites. I can go through weeks or months of crying constantly, sleeping all the time, and then escalate to feeling nothing at all. I want to die just so that the sadness and nothingness will stop. Then I swing up into mania, where I need very little sleep, I over-schedule myself and include myself in too many projects, and get more angry and frustrated. Eventually I want to smash everything around me, including my own head. When I’m lucky, I have brief periods of stability between depression and mania.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

You are worthy of love. You are worthy of feeling better. You did nothing wrong. You do not “deserve this.” You are not being punished. You just need to work with your family, friends, and treaters to find love and peace in yourself again.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating. Even though I have many friends and family who want to help (and often do!), sometimes you just need to speak with someone who knows what the bipolar roller coaster is like.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Not too long ago, I had to advocate for myself with my mother. My parents are my greatest allies and have been through everything with me. But my parents have also instilled in me the need to “pull myself together,” because “the show must go on” (we are a family of performers). Recently, my mother became exasperated with how I was feeling, and how I was reacting to my illness. I had to stop and tell her that even though I love her more than anything, bipolar disorder is not something that can be shoved to the side. It is not an illness that can be put in a box and left until it is more convenient. It infiltrates my brain every second of every day,  and I will never stop working with it, and trying to live with it. Advocacy is really just about education, and I think that that is something that we can do every day of our lives.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has shown me that I am capable of far more than I truly believe. It is so incredible to me that while other members of the community deal with horrible circumstances throughout their day, they can still take the time to offer me comfort or encouragement if I need it. PatientsLikeMe reminds me that I am allowed to be vulnerable or fragile at times, but that does not define me. It is part of the greater scheme and strength of having a chronic illness.

What are three things that we would be surprised to know about you?

  1. I am a professional opera singer. I have performed all over the world, recorded film scores, sung backup for James Taylor, sung at Superbowls and Red Sox games, and I am a Grammy award winner.
  2. I started reading when I was three years old, and I never stopped! I love the written word…especially Victorian Literature.
  3. I am a total geek…I love all things Star Trek, Star Wars, Doctor Who, and on and on and on!

What made you want to join the PatientsLikeMe Team of Advisors?

I love PatientsLikeMe, and I love helping people. When I was given the opportunity to combine those two things through the Team of Advisors, I jumped at the chance! It is so humbling and fulfilling when people bring you into their lives, and every encounter teaches me great lessons. My mother likes to say to me, “You have a big mouth; use it for good!” I hope that being a member of the Team of Advisors is doing just that.

 

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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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Patients as Partners: Cyrena on connecting through social media

Posted June 29th, 2016 by

Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media.

In addition to PatientsLikeMe, Cyrena is active on Twitter and Facebook and has used both to connect with other patients who what it’s like to live with bipolar II and lupus. Whether you’re social media-savvy or not, check out how she stays in touch with her virtual community to “exchange advice or just plain empathy” and get involved in patient advocacy.

 

“It’s all about networking”

Many patients live with multiple conditions, but the current nature of illness and treatment forces us to think of our conditions individually. In reality, these conditions interact and influence each other in ways that clinicians may not understand or recognize. Many of these patients end up online and looking for support.

I primarily interact with the chronic illness community on Twitter, but to a lesser extent on Facebook as well. I was an intermittent follower, but I became highly active during my hospitalization for my spinal cord injury in 2014. I didn’t really know any other chronically ill people with either of my conditions, but when I dove into Twitter, I found people with each, both, and so many more. It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.

The number one form of support that I obtain from interacting with patients online is validation. In physician appointments it is challenging to fit everything that I would like to convey or discuss in 15 to 30 minutes. But when I go online, someone is going through the same thing I am and we can exchange advice or just plain empathy. There is also an extensive patient advocacy community which I have become part of, which gives me the opportunity to not just voice my opinions on how patients are treated in the modern medical system, but also brainstorm with others on how to affect change.

“It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.”

 

First and foremost, I would recommend that patients interested in partnering with communities in social media recognize that there may be a sizable upfront investment. Twitter is akin to hovering above a massive highway and trying to identify which drivers you want to talk to. You can start by finding the Twitter name of one of the major organizations for your illness(es). Who do they follow? Follow some of those people. Who do they talk to? Follow those people. Start engaging people by sending messages pertaining to a topic of active discussion. Eventually those people start to follow you and your network grows.

Twitter moves very fast, but there are ways to stay engaged and live a normal life. I have a Twitter app on my phone that I check when I’m waiting in line or at the bus stop, and I keep a Twitter tab open in my browser when I’m working so I can pop in and out whenever I need a break from working. I have found the investment to be worth it because I like the rapid turnover of conversation and the opportunity to have a pseudonymous account. Others may prefer using Facebook for forming social media connections. There are thousands of patient groups there. Again, just start by searching for your illness and move from there.

It can seem scary and time consuming, but I’m an introvert and a graduate student. I just needed to find other people out there like me in some way. To quote a phrase I’ve heard endlessly over the past few months, “It’s all about networking!”

 

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Patients as Partners: Allison shares her insight on teaming up with organizations

Posted June 15th, 2016 by

Allison (center) receiving the 2015 “In Our Own Voice” Presenter of the Year award from the Dallas Police Department

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See what she has to say about the two principles that she relies on most in her relationships with these organizations, and what she’s learned along the way: “I realized I could use MY voice to help others.”

Can you tell us a little about the different organizations you’ve partnered with?

I have been working as a volunteer with NAMI Dallas. NAMI is the National Alliance on Mental Illness. I was on the NAMI Dallas board of directors. NAMI has affiliates in every state. They have programs for family members and for people living with a mental illness. I am a volunteer scenario trainer for Dallas Police Department. The scenario training is part of a 40-hour class that the officers take, focused on Crisis Intervention Training. I am certified to run support groups for DBSA (Depression Bipolar Support Alliance).

How did you initially get involved?

After being diagnosed with bipolar, I wanted to find other people who were living with similar conditions. I started attending support groups and taking classes at my local NAMI and DBSA organizations as a way to find support and learn about my mental illness. After attending many NAMI meetings I was asked if I would go to training to become a support group leader. Shortly after starting new support groups I was sent to St. Louis for training to become a teacher for their program Peer to Peer.

I also took a class that NAMI offers called, “In Our Own Voice.” This class helped me put my life story together so that I can organize my thoughts to share my story with others. After a few years of teaching and leading groups I was asked to tell my story to a group of firemen. The firemen and women were new recruits and I was there to give them some insight about mental illness and ways to be helpful when faced with mental illness calls. That talk was the beginning of something new for me. I realized I could use MY voice to help others.

I have been volunteering with the Dallas Police Department each month by doing scenario training. We create scenarios the law enforcement officers encounter on a regular basis. Our goal is to teach them new ways to work with people who show signs of mental illness. At the end of the week I share my life story with class of officers. It is an amazing experience when I have the chance to work with them and then share my story because they have no idea, all week, that I am a person who lives with mental illness. I was awarded the 2015 In Our Own Voice presenter for the Dallas Police Department, and that was a very memorable moment for me.

What are the dos and don’ts you’ve learned about how to effectively share your story so people will listen?

I have learned to share my story only when people are interested, if I am asked, or if I feel I will be helping someone by sharing my experiences. The most helpful thing I did to get me started telling my story was to take the “In Our Own Voice” class through NAMI because it helped me learn how to organize my thoughts. As time has progressed I have learned how to tailor my story for the specific audience I am speaking to.

Allison volunteering as a scenario trainer for the Dallas Police Department

Have any of the Partnership Principles you developed with the Team of Advisors helped you in your work with organizations like NAMI or the police department?

I would say “Respect each Partner” is something that resonates with me as I think of my journey. I have learned when I need to say no to a speaking engagement if I am feeling overwhelmed. I feel very fortunate that the wonderful people at the police department understand and respect me enough to not push me to over extend myself. They are actually better about making sure I am not overextending myself than I am.

“Reflect, evaluate and re-prioritize” is another partnership principle I live by. I have learned it is okay to move on when a relationship is no longer working for the good of both parties. I remember how difficult it was to step down from my position on the NAMI Dallas board of directors. I had been serving for over two years and felt that I wanted to put my energy into my training. I realized in order to stay healthy, I cannot overextend myself, and that meant giving up something if I wanted to take on a new role.

What advice do you have for other patients who want to learn more about partnering with organizations?

Be creative! I NEVER imagined what attending support groups was going to do for me. I would never have met some of my closest friends or had the opportunities to work with some of the best organizations if I didn’t go to that first meeting. Each time I tell my story, it helps me work on my recovery to a healthy life. I encourage everyone to try something new and see where it takes you. You will probably be surprised.

 

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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: Harnessing the fire of bipolar

Posted February 25th, 2016 by

Over the last few weeks, new PatientsLikeMe member Paul has been opening up about living with bipolar and how this condition inspires his art. Touched with Fire, a debut feature film now playing in select theaters, was written, edited, directed and scored by him and draws on his personal experiences.

Discovering Kay Jamison’s book of the same name gave a new meaning to his condition when he needed it most. With the management of his bipolar now a finely tuned process, Paul says the most important thing is to “learn how to thrive in it. Not just get by in it, and not to be destroyed by it.”

Here’s what Paul has to say:

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

 

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Meet Cyrena from the PatientsLikeMe Team of Advisors

Posted February 24th, 2016 by

 

Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology.

Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses.

Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered.

What gives you the greatest joy and puts a smile on your face?

Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle that I have faced living with chronic illness has been getting through graduate school successfully (and in one piece!) I believe that making higher education, particularly graduate and professional education, more supportive of students with chronic illness would require that institutions recognize that chronically ill students are willing and capable of completing a challenging degree. Completion, however, requires that colleges and universities be able to provide appropriate medical and psychological support, and if they are unable to do so directly, facilitate access to these resources through disability support offices. Most importantly, chronically ill students need to KNOW that these resources exist and that people around them are confident that they will be able to succeed.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Waking up everyday and not knowing what that day will feel like. Today I may be able to roll right out of bed and get on with my day, even though it feels like I’m swimming through a vat of molasses. Two weeks from now it could take me four hours to get out of bed, take a shower, and go back to bed again because I simply am too depressed to face the day. But no matter what’s happening, more often than not no one else can see what’s going on. That’s every day living with invisible illnesses.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become an expert! No one knows more about you than YOU do. But also learn as much about your illness(es) that you can, so that when you communicate with your physicians and other healthcare providers, you have a better chance of understanding what is going on before you leave the office.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has actually been more important to me to find people living with other chronic illnesses than finding people with my specific illnesses. I find that within particular illness communities there is a tendency to fall into a cycle of comparison — both positive and negative — rather than support. In meeting people with other chronic illnesses, I have been able to share general survival tips and identify ways in which the chronic illness experience can be improved for all members of society.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I believe that I advocate for myself whenever I have an interaction with my physicians. I come in with a specific set of questions and concerns and make sure that the appointment doesn’t end until we have at least talked about them. Short of emergency situations, I don’t believe that anything involving my health is a unilateral decision. And I make sure to get copies of anything I ask for, even if they grumble about it.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It was PatientsLikeMe that introduced me to the concept of tracking my moods online, then other health parameters like medications and quality of life. I now have over seven years of Mood Map data online. It gives me the opportunity to go back through my history and compare external and internal factors between past and current mood events. When I first started using PatientsLikeMe, I was a more active member of the community forums, and found it immensely helpful when I needed somewhere to turn with the aches and pains of everyday life with illness.

What is your favorite type of pet?

Cats, hands down. A cat is introverted and sometimes standoffish, but (s)he’ll be your best friend if you put in a little effort.

 

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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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