144 posts in the category “Mood Conditions”

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 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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Treating PTS: What members said in a recent study

Posted June 27th, 2016 by

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered.

Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.

 

 

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Meet Doug from the PatientsLikeMe Team of Advisors

Posted February 19th, 2016 by

We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008.

Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of his biggest challenges has been opening up about his depression. He believes that MDD isn’t talked about enough in society: “We’ve got to figure out how to encourage the sensitivity and understanding.”

Here, Doug describes a vivid picture of what it’s like to live with depression and offers some advice to other patients: Find others living with your condition, and know that you’re not alone.

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

My kids, their antics and achievements, their growth, even their mistakes, are what get me up in the morning. Drawing closer to seeing or speaking with them is probably my greatest motivator. It’s funny, though; I wouldn’t label what they bring as ‘joy,’ per se. When you’re living with chronic Major Depressive Disorder, and when you’re treated with an affect-flattening medication like lithium, joy all but falls out of your vocabulary. But my kids are definitely the closest I come. My extended family, my girlfriend, creating theatre and my faith all fall in close behind.

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?

Perhaps the greatest obstacle I’ve had in living with depression, aside from considering self-injury or enduring an episode itself, has been personally and openly admitting that I suffer from what society and medicine deem a “mental illness.” Though it may help some folks (docs) with classification, I usually find it a fairly useless, divisive, overly-general, stigma-laden label. Yeah, it may be practical to use medical terms to initiate basic understandings, but I now try to move other folks I affect or who affect me past the crappy designations and into how the disease (and the medication/side effects) actually manifest themselves in my life. Moving past the ill-connoting “mental illness,” with its lurking suggestions of some sort of moral turpitude, loss of touch with reality and personal weakness or inability to perform/produce, I go into the specific realities of this dad’s/teacher’s/actor’s/partner’s life: how I deal with occasional flat effect, distraction and crying episodes; what Electroconvulsive Therapy actually consists of and why it had to be administered to me; and the prescription side effects like word-fishing, tardive dyskinesia and even ED.

When people are moved past the general and abstract toward the specific and concrete, I think we begin to enter productive territory and can make inroads. We’ve got to figure out how to encourage the sensitivity and understanding that come with specificity.

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

I’ve tried for figurative examples of “normal” human experience that people could magnify and see themselves in, but it usually doesn’t work. I often simply describe my own experience…

Imagine a trained general practitioner making fun of you for your “pretend” gut ailments, asking if you want to “man up” or whether he should prescribe you some Prozac. Imagine trying to choose the former when what you really need is the latter. Imagine suffering the consequences of foregoing treatment…

On the slide down, imagine crying in four-hour stints. Imagine trying to convince your three kids that Daddy’s crying has no relationship whatsoever to them, to what they’re doing, to their innate value or to your profound love for them. Imagine being so distraught that you don’t sleep for a month. That you forego food. That you lose 30 pounds.

Imagine not wanting to wake up. Ever. For weeks. And Imagine feeling that way even when no horrible incident, no traumatic scene, no injury had prompted it. Imagine never wanting to wake up, and for no particular reason.

Imagine not wanting to bathe. Imagine deriving no comfort from the warm water streaming down your body on a cold winter’s day in the shower when you finally get there (you’re mother’s been urging for a couple days now, and finally actually led you by hand into the bathroom).

Imagine finding yourself on a psychiatric ward, where they’re weaning you of meds so as to treat you with ECT. You learn your parents delivered you there (you’re 49 years old and live some 10 hours from them); you don’t even remember them delivering you (motivated forgetting).

I could go on, but I think this gives you an idea. Folks who haven’t done significant time with depression probably don’t understand these illustrations, but they may find a point to connect, or, at the least, be struck by such a profoundly different human experience. These examples, if nothing else, begin to point at the devastation depression creates.

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

Get armed with info and understanding. Do your homework. Find real, live people like you who deal with the same condition. Talk with them, listen to them, come to see that you don’t stand alone and that there are others who understand. Internet is good, but real life is better. Dive into your faith.

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

PatientsLikeMe has done three major things for me. I had been logging basic baseline mood and other information on a smaller website when I learned of PatientsLikeMe. The stuff I’ve laid into the site chronicling my illness over the past eight years has served as a solid longitudinal record of the trajectory of my depression and PTSD, a record arguably more significant to me than my formal medical records. In addition, PLM has provided community; through site content and interaction with my fellows, I’ve gained insights and support. I’ve also been able to offer my own impressions and understandings in public forum, and, finally, through working on the PLM Team of Advisors, I’ve been prompted into deeper advocacy and peer support.

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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:

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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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

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The Patient Voice- PTS member David shares his story

Posted June 27th, 2015 by

Today is PTS Awareness Day, so we wanted you to meet PatientsLikeMe community member Cpl. David Jurado, who lives with post-traumatic stress (PTS). David developed PTS while serving in the military. After he retired, he continued to deal with daily symptoms, and he encourages members to connect with others on PatientsLikeMe, because “if you want to make changes for yourself and the PTS community, you’ve got to share your story. The same thing may be happening to them.”

David is not alone – and neither are you. There are more than 1,000 vets living with PTS that are part of the community. We’ve heard members like David talk about how important it is for them to connect with people who ‘get it.’

Not a veteran living with PTS? You’re not alone either. With more than 8,000 PTS members, it’s easy for anyone with PTS to share their story and get support.

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Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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Getting to know our Team of Advisors – Kitty

Posted June 18th, 2015 by

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others.

About Kitty (aka jackdzone):
Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding out what patients’ unmet needs are.

Kitty on patient centeredness:
“To me, it means that it’s all about the patient from start to finish. In the beginning, it’s talking with patients, conducting patient surveys and reading any written material that would be helpful in order to find out what patients are most wanting and needing and not getting. In healthcare, this would translate to a doctor engaging with a patient in a way that is especially helpful for the patient. This may require asking a question a certain way in order for the patient to answer truthfully and to feel that their doctor really cares about them as a person. (I was fortunate enough to have had one primary doctor like this for many years and it makes a huge difference!) It puts the focus on that particular patient at that moment and requires empathy and understanding (and not just going through the motions) in determining what is best for that patient.

In the area of research, the same is true. Research of this kind is done to improve the client’s physical and/or mental life in some way. Any research should be done with the patient’s well being at the forefront. Questions should be asked in a way that will lead the client to be very open about their experiences. The client should be fully informed regarding any research in which they participate and be asked at the end if there is anything that has not been covered that they have questions about. They should be informed of the results of the research afterwards and perhaps be allowed to give their thoughts about the findings.”

Kitty on being part of the Team of Advisors:
“A year ago, when I read that PatientsLikeMe was putting together a Team of Advisors, I didn’t hesitate to apply. I wanted to be part of something that had helped me a great deal during a part of my life when I was the most depressed and struggling. When I was eventually chosen to be on the team, I was and have continued to be very honored. I feel such a strong affiliation with PatientsLikeMe and want to be able to help others in anyway that I can. During this past year, I’ve been able to participate in helping to compose a patients’ rights handbook and be interviewed by a researcher regarding how patients view clinical trials. Being on the Team of Advisors has given me the chance to become an advocate for myself and others. It is something that means a lot to me and something that I enjoy doing–and I think it’s something I will continue to do in whatever capacity I can throughout my life.”

Kitty on helping others:
“From the very first day that I joined PatientsLikeMe several years ago, the website has meant a great deal to me. Most of the people in my life did not really understand what I was going through. At times, they thought I really could have done more, but that I was just being lazy. When you are suffering from MDD, this viewpoint from others only increases your depression. I didn’t know where to turn. What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. As I began posting on the site about what I was going through and how depressed I was feeling, I felt somewhat better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.

After awhile, I made it a point to also reach out to encourage others. I noticed that some people seemed to be very depressed on a daily basis with very little hope and I felt I had to reach out to them in some way. I began responding to their posts. A lot of times I just said that I was sorry that they were feeling bad, as I didn’t know what else to say. I hoped that just this much would encourage them. I didn’t want to be overly upbeat if that wasn’t how they seemed to be feeling, because I felt this was a disservice to them. I felt that the more I could just be there for them right where they were and with how they were feeling the more I could be of help.”

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PatientsLikeMe usability study for mobile app

Posted June 3rd, 2015 by

Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect, that’s exactly what we did. We invited a handful of members to come into the PatientsLikeMe office and test-drive the app.

Alex (ITalkToTheWind), a PatientsLikeMe community member, took some extra time to share about her experiences testing the app in an interview. One of the features, InstantMe, is a tool on the PatientsLikeMe website that’s a simple way to track and share how you’re doing. In this first pass of the app, and since she’s become a member in 2010, Alex has posted more than 1500 (!) InstantMe updates. Not only was she extremely helpful with her feedback, but she also brought in the artwork she’s created based on her InstantMe entries. Everyone on the PatientsLikeMe team was honored that Alex brought her art into the office for us to see, and we wanted to share it with the rest of the community, too. Here’s her story: 

Alex, what was it like doing the usability testing?
It was great to come down to the PatientsLikeMe headquarters to give my personal feedback on the first pass at PLM Connect.

I update my InstantMe every day, so I’ve been very eager for an application I can use while I am away from my computer so my charts can be as accurate as possible. Throughout testing the beta application, I got to dictate my thought process step by step with the engineering team. I communicated different ways to improve the application’s features, programming and design to make it more user-friendly and to have it operate more smoothly.

I also got to tell the team what my personal wants would be for a PatientsLikeMe application. Since I am an artist, it was great to be able to talk about how the design could compliment the different functions of the application. I mentioned how important it is to carry over the community and support aspect that is available at the main site over to the application. Overall, I was trying to think about the entire diversity of conditions in the community and how they could benefit using the application, and how to make it as easy to use as possible.

How do you use InstantMe on PatientsLikeMe?
I’ve been using InstantMe religiously to keep track of my moods for five years now, since I was diagnosed with my primary condition and began my treatment process. I basically see everything I’ve accumulated through my InstantMe as a diary of my life for the past 5 years.

It is very important to me to see how my treatments, symptoms, and life events all correlate with my moods to understand what is or isn’t currently working, and what has or hasn’t worked in the past, especially in a visual way. I’ve been able to keep track of absolutely everything I’ve tried to treat my conditions including medication, herbal supplements, vitamins, diets, different therapists and therapeutic approaches, exercise, lifestyle changes and meditation.

InstantMe also gives you the option to explain “Why” you are experiencing your mood, which has been crucial to me in reflecting on the moments that seemed so difficult at the time.

Another interesting part of that feature is reviewing how my automatic thoughts have changed through my treatment process, which is also really important for someone who suffers from mood swings like I do. I react differently now to difficult life events and can see how I’ve been better able cope with stress over the five years. It’s really nice to see how far I’ve come. 

Will you share a little about your InstantMe artwork?
My work is about the disconnect that occurs with one’s experiences and personal identity over time. I make paintings and drawings using my InstantMe mood logs, and other PatientsLikeMe charts by transferring them onto a physical material such as a wooden panel or paper.

I correlate the text from the InstantMe’s to remember why I was feeling good, bad or neutral and paint symbols to represent that time period, or draw the mood logs themselves into a painted environment or memory in which I was experiencing that mood.

It’s a lot about trying to gain a connection with these fleeting moments and my shifting identity over time and learning to accept them … the process of creating the artwork itself helps me cope with my condition.

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“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

Posted May 19th, 2015 by

Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others.

How it all began:
In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and I tried suicide. My parents then put me in a psychiatric hospital, where I stayed for about a year.

What schizoaffective disorder feels like:
When not on any antipsychotic medications, I feel like; others could hear my thoughts (broadcasting), that I could hear other people’s thoughts (mind reading), that I could communicate by thought with others without speaking a word (telepathic communication), not only could I communicate with other people in this way but I could communicate with other things as if they had human like qualities (anthropomorphic telepathic communication), believing that I am super important to the world (grandiose thinking), that others were out to kill me (paranoia), and I would become very delusional. But, now after taking the antipsychotic medications for some time, not only do I not believe that these things (powers) were never true for me, I also believe that no one else has these powers. Maybe some people may have others out to kill them, but this is not true for me. Also, for over 35 years (1977 – 2013) I believed that God would talk to me personally and would give me personal instructions, but now, I don’t believe this is/was ever true.

On top of having psychotic episodes, my mood has fluctuated from being euphoria, extremely joyful, super happy, with very little sleep, feeling like I didn’t need to sleep, etc. to suicidal lows, dysphoria, deep dark depression, and sleeping a lot with not being able to get out of bed, etc. My mood swings greatly in duration and intensity for reasons I am not fully aware of.

My quality of sleep is very poor. When I lay down in bed to go to sleep, my body/mind tortures me so much that if I haven’t gone to sleep within about five minutes I get up out of bed to relieve the torture like sensations. The torture sensations might be; restless legs, a general restlessness of my body or mind, a sensation in the back of my throat, an itch, or any thing that my mind can not stop focusing on. Once I have gone to sleep, I only sleep for about an hour before I awake. Once awake I go through all of the problems of falling back to sleep again. The sleep I do get is not refreshing. My mood and sleep go hand in hand, when my sleep is bad, my mood swings are bad and when my mood swings are bad, my sleep is bad and vise-a-versa. I have had a recent improvement my mood/sleep problem. It may be due to my new medication, Latuda that I am taking. Only time will tell if Latuda will continue to help.

What happened when I tried to stop taking my meds:
I stopped taking all my medications because I wanted to see if they were doing anything for me. Everyone told me that this was a bad idea, but I did it anyways.

As time progressed I could tell that my wife, Audrey, wanted to confess something to me, but was scared that I would not be able to handle it. I could also tell that Audrey talked to my counselor about this, and that my counselor agreed with her not to tell me. They were keeping something a secret from me. We danced around the issue, as if there was a white elephant in the room that no one was willing to talk about.

I figured that Audrey was having an affair with the senior pastor of a local mega church that she belongs to. It appeared to me that Audrey was willing to break off the affair and go public with it, but the pastor was not. To keep it from going public, I figured that the pastor hired a hit man to kill me. The more I thought about it, the more I was sure of it.

One day after Audrey left for work, I panicked. I started running. The first thing I did was try to get a hotel room without showing ID. However, all the hotels that I tried required ID. The way the hotel staff acted made me all the more sure that the pastor was getting help in finding where I was. At this point, I went into a Jack in the Box to get something to eat, and I could tell by the way people were acting that they had received the reverse 911 call on me. I figured the senior pastor that was having an affair with my wife knew that I knew about the affair and that I was running, so he convinced the police that I was either a danger to myself or to others, and that they should put out a reverse 911 call to find me.

I quickly left the Jack in the Box and got back in my car. I drove to a Rite Aid store and bought some bottled water, because I was planning to hide in the desert. The employees at the Rite Aid seemed to be acting strange around me, as if they, too, received the reverse 911 call on me. I quickly got in my car and drove into the desert, trying to find a safe place, but I saw a helicopter in the distance, and I knew I was not safe there either. I got on the freeway and headed north.

I had not been sleeping well for weeks and was getting very tired. Having a bottle of 200-milligram caffeine tablets with me, I took one. It helped only a little. I was also taking them to help me feel better, and I already had a lot of caffeine in my system. After driving for about fifteen minutes, I felt sleepy again, so I took another caffeine tablet. This sequence of events continued. I was taking a caffeine tablet about every five to fifteen minutes.

After driving for about two hours, I was scared that I might be a danger to myself or, worse, to someone else, because I could easy fall asleep behind the wheel. I pulled off the freeway into the parking lot of an old run down hotel. I figured that these people would be willing to hide me.

I booked a room, even though I had to show my ID. They too appeared to be acting strange. I figured that my picture must be on TV, so that people could be on the lookout for me. Everywhere I went people were looking at me funny. At the hotel I tried to lie down on the bed to get some rest, but I could not rest. I was wired. I got back in my car and drove north again.

After driving for about another hour, I came to the conclusion that I could not hide, and that they would eventually find me and kill me no matter where I went, so I stopped running. I called Audrey and told her I was coming home. Still very tired, I got back in my car and took another caffeine tablet or two.

I do not remember if my son called me or if I called him, but my son and I talked. I told him that I thought his mother was having an affair. Talking to him did help me stay awake while driving. After talking to my son, I called a friend to have him talk to me to help me stay awake. I was still taking a caffeine tablet about every five to fifteen minutes.

Half a bottle of caffeine tablets later, and with the help of everyone, I finally made it home that night. My wife and I got ready for bed, but I could not get any rest.

I got up and started playing on my computer. This was no help, for I started to worry about the Internet crashing, which would cause havoc to our society. Not only was I worried that the Internet could fail, but I believed that I could make it crash, if I wished. This really bothered me a lot.

The way I figured it was, if I did not make it crash, myself, it would someday crash by itself. The more I thought about this, the more I was sure of it. The problem was that if it crashed later we would be worse off and our society would not be able to recover.

I figured that the Internet could not handle human emotions, so I decide to make it crash that night by causing it to be jealous of my other computer—that was not connected to the Internet. I told my computer that was connected to the internet, that I loved my other computer more.

In the morning, Audrey took me to the emergency room at a hospital where there was a behavioral health unit.

Now, I was really afraid of just about everything and everybody. I thought that the internet was out to get me. I believed that the FBI, CIA, and Homeland Security were called in because I was viewed as a national threat. I also believed that the hospital needed time to get agents into the locked ward to act as patients.

After spending most of the day in the emergency room, I was all the more sure that these things were true. I thought they would put me in the behavioral health locked ward, but they did not. Instead, they put me on the surgical floor.

Now, I really believed something was up. Why would they do that? This scared me even more.

On the surgical floor, they had a nurse sit by my bed. I thought she was working for the government to find out if I was a national threat or not. I told her everything about my relationship with my computers and how I caused the Internet to crash. At this point, I thought the Internet had already crashed and it was all over the news, because the hospital staff would not let me watch TV.

To make matters worse, I was craving sex, badly. I was hoping the nurse would be willing to do something with me, if Audrey gave her okay. It seemed to me that Audrey did not want to have sex with me, and she might be willing to let me play with someone else. So, if she was willing, I was willing. But this never happened.

I was scared out of my wits. I wanted the hospital staff to put me in lock-up. Believe it or not, I felt more comfortable in the lock-up ward than I did on the surgical floor.

Later they put me in the mental health lock ward and placed me on a three-day hold, and then on a two-week hold. They stated that I overdosed on caffeine, that I was a danger to myself and others, and that I could not care for myself.

At first I refused to take the medication they wanted me to take, but later I did take it and I got better.

Now I can see that I was very delusional.

Where I’m at today:
My life has been full of ups and downs, twists and turns, which have taught me an important fact, keep the main thing the main thing, which is to love God with everything I got by loving others as I would have them love me with forgiveness, compassion, endurance, patience, mercy, grace, charity, tenderness, strength, wisdom, kindness, and with all that causes good to happen. The way I see God is He is more of a Spirit than a being, like Santa Clause is more of the spirit of giving at Christmas time than a actual being. Different psychiatrists have given me different diagnoses and prescribed different medications at different times in my life. When I am not suffering with my symptoms of mental illness, I enjoy working with my robot, studying and doing math, writing books, writing computer programs, and thinking about God stuff. If you have any questions either about myself or my fight with this illness, please ask me.

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