11 posts tagged “mental illness”

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:

Having trouble watching the video? Click the button below:

 

 

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

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Allison’s story

Posted December 3rd, 2015 by

Last month we introduced Allison, a member of your 2015-2016 Team of Advisors living with bipolar II. She recently opened up in a video about how sharing her data on the site helped her recognize when she might have an episode, and partner better with her doctor to prevent new episodes from happening.

You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Data for you. For others. For good.

 

 

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Meet Allison from the PatientsLikeMe Team of Advisors

Posted November 20th, 2015 by

Meet Allison, one of your 2015-2016 PatientsLikeMe Team of Advisors. Allison is living with bipolar II, has been a PatientsLikeMe member since 2008 and is a passionate advocate for people living with a mental health condition. Refusing to let her condition get the best of her, she partners with her family to self-assess her moods and tracks her condition on PatientsLikeMe where she’s been able to identify trends. She also gives back to others through her advocacy work on the board of directors of the National Alliance on Mental Illness (NAMI) in Dallas, where she lives, and currently with the Dallas police, helping train officers with the Crisis Intervention Training (CIT) program. Additionally, she works with the Suicide Crisis Center of North Texas helping to implement a program called Teen Screen and has shared her story of living with mental illness to groups and organizations all over the state of Texas. She even testified to the Texas State Legislators about the importance of mental health funding.

A former teacher, Allison is going to graduate this November with a master’s degree in counseling. Sharing about her journey with bipolar II has enabled her to live a life of recovery. This has also fueled her to empower others to share their own stories.

Below, Allison talks about her journey, advocating for herself and reaching out to others.

How has your condition impacted your social or family life?

Living with bipolar/mental illness has had a huge impact on every part of my life, social, family and work. My family has had to learn (along side me) how to cope with my changing moods. My moods do not change instantly but they can change within the day, week or month. When something triggers a mood change for me, and that trigger can be unknown, my physical demeanor can change. When I show physical signs of changing, such as withdrawing and I am starting to isolate (a sign of possible depression) or when my speech picks up and I start to lose sleep (a sign of hypo-mania) my family will ask how I am feeling, without being judgmental, as a way for me to self evaluate my moods. I have lost many friendships due to my depression. When I have isolated for months at a time some of my friends have stopped coming around. Nobody calls. It seems like I have nobody in the world to turn to and that just adds to the darkness of depression. I have learned it is my responsibility to let people know what I am going through so that they can be there for me when I need them most. The hardest part of this is letting people know that I live with this thing called bipolar and I need help from time to time. It is very frightening to be vulnerable because I do not know if people will be willing to stay with me through the ebb and flows of my illness.

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

There have been a few times that I have had to advocate for myself while living with bipolar/mental illness. The one time that I will never forget and took the biggest toll on my well being was dealing with my insurance company. There is a medication I take that is VERY expensive and there was not (and still not) a generic form of this medication. There is however a medication that is in the same family/class as the one I need to take. The problem is, I DID take that other, much cheaper, medication for an extended amount of time and found myself in a mixed episode (when I was hypo-manic as well as depressed at the same time) and I was close to hospitalization. My doctor wanted me to try a medication that was fairly new on the market. To my surprise it was the medicine that worked for me. I became stable and life was good for a long time. Earlier this year (2015) my insurance company wanted to put me on the older medication, due to the price of the current drug. I explained the problems and asked that they reconsider their decision. I was devastated when then informed me that I would HAVE to go back to the old medication or pay out of pocket for the newer medication. My husband and I decided to dig deep into the wallet for a month and purchase my medication while attempting to appeal the insurance companies decision. We lost the appeal so I went back to the medication they chose for me (because I could not afford the monthly cost of the newer drug). It was no surprise when I started to feel the effects of the cheaper medication and felt like I may end up in the hospital because the depression was getting too bad for me to live with. I made another appeal and this time they told me the expensive drug was out of stock but when it became available I could have it. With relief in the air I dug into my wallet, yet again, to purchase another month of the newer drug to get me started until it became available. To my dismay they told me it was STILL on back order from their distributor. I am fortunate enough to have a friend who is a pharmacist in that part of the country, so I called and asked her. She did the research and found out it was never on back-order, but there may have been a recall for a different dose many months earlier and that should NOT have effected my request. I immediately contacted my insurance company with the facts I found out through my research and without question, I had my (expensive) 90-day prescription delivered to my door the next day with signature required. There were no questions asked. It infuriated me that I had to do that much work and put my mental health / well being in jeopardy for the sake of the dollar. Not everyone can advocate as I had to do, so when I can I will step up and help those who struggle and do not see a solution to their problem. I know how that feels because there was a period of time I did not feel there was an answer to my problem until I had to be creative and advocate.

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

Words cannot explain the importance and the role PatientLikeMe has played in my well-being while living with bipolar and mental illness. I do not even recall how I found PLM in 2008, but when I did I started my work right away. I started charting and graphing. I have to say, part of it was because it was fun to see up and down on my graphs after a few days. Then it was a challenge to get 3 stars. When I fell to 2 stars I was frantic to get my 3 stars back and then it started to really come together for me. I started to see my actual mood cycles. After a few years I started to recognize my mood cycle in March and it is a time of year my doctor and I start to become proactive ahead of time. After all of these years I cannot possibly remember when I took a medication or why I stopped taking it. Now I am getting much better at giving myself better details about each medication, which in turn helps the community, as a whole, learn more. PLM has supported me emotionally by standing by my side as I do fundraising walks in my community for mental illness and suicide prevention. PatientsLikeMe has made generous donations on my behalf, sent team shirts for us to wear and in return I have been able to spread the word about PLM and what a difference it makes to me and thousands of others. I feel honored and blessed to be on this year’s team of advisers. I want to help make a difference in the lives of others, like PLM has done for me.

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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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Mental Illness Awareness Week: #IAmStigmaFree

Posted October 5th, 2015 by

The National Alliance on Mental Illness (NAMI) spends the first full week of October fighting stigma, offering support, educating the public and advocating for equal care for those living with a mental health condition. While these are a year round focus for them, this week highlights mental illness awareness and 2015 marks its 25th anniversary.

#IAmStigmaFree
This year’s theme revolves around building momentum through the new StigmaFree initiative. Being stigma free means:

  • learning about and educating others on mental illness
  • focusing on connecting with people to see each other as individuals and not a diagnosis; and most importantly
  • taking action on mental health issues and taking the StigmaFree pledge.

Did you know…

  • 1 in every 5 adults – 43.7 million – in America experiences a mental illness.
  • 50% of all lifetime cases of mental illness begin by age 14 and 75% by age 24.
  • Nearly 1 in 25 adultsapproximately 13.6 million –in America live with a serious mental illness.[1]

Mental Illness Awareness Week encourages people to come together to improve the lives of the tens of millions of Americans affected by mental illness.

How can you get involved?
You can learn how to spread awareness this week on the NAMI site. You can involve friends and family in a movie night, book club or awareness day at work or school. Share your story on the You Are Not Alone page. Engage your community in advocating for mental health. Learn the facts. Or join a NAMI Walks team.

National Depression Screening Day
Held on October 8th, during Mental Illness Awareness Week, National Depression Screening Day (NDSD) is comprised of awareness events that include an optional screening component.

National Depression Screening Day began in 1990 as an effort by Screening for Mental Health (SMH) to reach individuals across the nation with important mental health education and connect them with support services. Today, NDSD has expanded to thousands of colleges, community-based organizations, and military installations providing the program to the public each year.

So however you choose to get involved this week, don’t forget to log in to your PatientsLikeMe community to continue sharing your own stories with others.

Let’s fight stigma, together.

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http://www.nami.org/Learn-More/Mental-Health-By-the-Numbers [1]


Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

Share this post on Twitter and help spread the word for depression.


It’s time to recognize mental illness in October

Posted October 6th, 2014 by

Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October 5th to 11th, we’ll be spreading the word for Mental Illness Awareness Week (MIAW).

What exactly is a mental illness? According to NAMI, A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. [They] are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

There are many types of mental illnesses. The list includes conditions like post-traumatic stress disorder, bipolar II, depression, schizophrenia and more. MIAW is about recognizing the effects of every condition and learning what it’s like to live day-to-day with a mental illness.

This week, you can get involved by reading and sharing NAMI’s fact sheet on mental illness and using NAMI’s social media badges and images on Facebook, Twitter and other sites. Don’t forget to use the hashtag #MIAW14 if you are sharing your story online. And if you’re living with a mental illness, reach out to the mental health community on PatientsLikeMe – there, you’ll find others who know exactly what you’re going through.

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PatientsLikeMe Researchers Score a Hat Trick

Posted July 11th, 2012 by

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days, bringing our total number of published studies to 27.

An Image from the Third Published Study in Our June Hat Trick:  "Mining Social Network Data for Biomedical Research"

As employees at a start-up company, we all wear many hats – literally, as you can see from the photos below, and figuratively, in terms of our responsibilities as scientists, product developers and business people across different disease areas. For instance, in this trio of papers, we address research issues in multiple sclerosis (MS), ALS and mood disorders. Click on the study titles below to read the full papers and a big thank you to all of our patients for sharing your voices and making this research possible.

Monday, June 18th – First PatientsLikeMe study published.

The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Members of our MS community will be familiar with the MS Rating Scale (MSRS), which is their primary outcome measure. We developed it a few years ago to address an unmet need for a brief, easy-to-use rating tool that covered more areas than simply walking. In collaboration with a neurologist, we sketched out our first version of the MSRS, which has now been used over 90,000 times by our 28,000+ MS members to share your progress, track your relapses and disability, and gain insight into how your treatments are working.

PatientsLikeMe Research Scientist Dr. Tim Vaughan

Published in the Journal of Medical Internet Research, this new study describes work to improve the MSRS to a revised version (the MSRS-R) and establish that the instrument measures what it is supposed to measure (reliability), that it correlates well with other instruments (concurrent validity) and that it allows differences between groups of patients (sensitivity to change). This process of “validating” a patient-reported outcome (PRO) is an important step in increasing the value of the data that we produce for researchers. Studies are underway right now to continue improving the instrument and compare it to doctors’ ratings of patient disability.

As with all outcome measures we develop at PatientsLikeMe, we have licensed the MSRS-R for anyone to use freely in their own research studies. This work also serves as a foundation for our resident predictive modeler and particle physicist Dr. Tim Vaughan to begin work on predicting the course of an individual patient’s disease using your MSRS scores!

Tuesday, June 19th – Second PatientsLikeMe study published.

E-mental health: A medium reaches maturity

PatientsLikeMe Research & Development Director Dr. Paul Wicks

The Internet has transformed many aspects of healthcare in the past decade, and to open a special issue on “E-Mental Health” in the Journal of Mental Health, our R&D Director Dr. Paul Wicks was commissioned to write a special editorial.

Available by clicking the link above, the paper describes the progress of online systems for people with mental health issues, from government-provided resources (such as this UK NHS Choices site about self-harm) to commercial, computerized cognitive-behavioral therapy programs like “Beating the Blues” and collaborations between different sectors of the health system. For instance, in the UK if you Google “suicide” there is a special message from the Samaritans mental health support service right at the top of the page.

At PatientsLikeMe, our vibrant mood community has been active since 2008, and our published research has shown that it provides improved outcomes to many of our members.

Thursday, June 21st – Third PatientsLikeMe study published.  Hat trick completed.

Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments

As you probably know, the story of PatientsLikeMe starts with ALS and trying to find treatments that can improve the symptoms, including anxiety, stiffness, or constipation. Back in 2003, ALS nurse Dallas Forshew and Dr. Mark Bromberg published a small study describing massive variation in the way ALS doctors from 39 specialist centers treat the symptoms of ALS. This data was also described in our 2010 TEDx Berkshires talk about the value of crowd-sourced data.

PatientsLikeMe Research Assistant/Software Engineer Shivani Bhargava

In this new study published in the Journal of Medical Internet Research, we collaborated with researchers at the University of Utah to compare the passively collected ALS patient data from our system with what the clinicians said. Although they agreed in most areas, there were split opinions too, particularly when it came to the perceived level of efficacy that these treatments had. Click the link above to read more.

This paper is also notable for being our own Shivani Bhargava’s very first scientific publication! Shivani started with us as an intern, then became a research assistant, and has recently made a career change to start studying as a software engineer. A true renaissance woman!


What We’re Reading at PatientsLikeMe

Posted July 2nd, 2012 by

Here are some of the media items that grabbed our attention recently.

What Air Traffic Can Teach Us About Kidney Transplants
Air traffic rules balance fairness and efficiency. Can organ waitlists do the same?

Open Access Is Not for Scientists.  It’s for Patients.
A guest blog post by our R&D Director, Paul Wicks, for the Public Library of Science.

What We're Reading at PatientsLikeMe

Snake Oil?  Scientific Evidence for Health Supplements
A very cool health data visualization from Information Is Beautiful.

Facebook Urges Readers to Add Organ Donor Status
Are you going to add your organ donor status?

Glenn Close:  Let’s End the Stigma Around Mental Illness
A great look at how we discuss mental illness – and the impact our words can have.

What are you reading?  Share your recommendations in the comments section.


Mental Illness Awareness Week: Stigmas, Stereotypes and Sharing

Posted October 6th, 2011 by

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

Share How You're Feeling Right Now with Instant Me

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

February 2011 PatientsLikeMe Poll Results from 3,858 Patients with 10 Different Conditions

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.


Mental Illness Awareness Week: What Does Depression Feel Like?

Posted October 4th, 2011 by

It's Mental Illness Awareness Week, Sponsored by the National Alliance on Mental Illness

Since 1990, the first week of October has been recognized as National Mental Illness Awareness Week by the U.S. Congress. Under the leadership of the National Alliance on Mental Illness (NAMI), mental health advocates across the country are joining together this week to sponsor numerous awareness-raising activities based on the theme of “Changing Attitudes, Changing Lives.”

Here at PatientsLikeMe, we have thousands of patients sharing their experiences with more than a dozen mental health conditions, including 7,699 patients who report major depressive disorder and 1,638 patients who report postpartum depression. What do they have to say? Below is a “word cloud” of some of the most commonly used phrases on our mental health forum. The most popular single word, by the way, is “meds.”

A Word Cloud of Some of the Most Commonly Used Phrases in Our Mental Health Forum

This graphic (which you can click to enlarge) gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health.  But the best way to increase awareness and knowledge, we believe, is to learn from real patients.  According to NAMI, one in four adults experiences a mental health problem in any given year, while one in 17 lives with a serious, chronic mental illness.

To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out.  I would be near the top, but oops….down I go.  I truly felt that I would not be able to pull myself out of this one.   I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box.  You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it.  You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success.  At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step.  You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning.  I can’t run.  I can’t walk or crawl.  In fact, I have no options.   I have no memory of how I came to be there.  I know I’m going to die, I don’t know when or exactly how.  There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear.  My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions?  If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.  Also, stay tuned for another blog later this week about the types of data being shared by our mental health members.