38 posts tagged “depression”

Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

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

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

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?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

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

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

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

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

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

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

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

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

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

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

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“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Posted November 4th, 2016 by

Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions.

Check out what he had to say about what helps him find peace and harmony while “living with ALS, not dying of it.”

Tell us a little bit about yourself. What are you passionate about?

I am a husband, father of 4 adult children, and grandfather of 2. I am all about making life better for others, especially for those living with disabilities. That involves consulting to our city administrator about accessibility, working with my national church organization to improve inclusion of people with disabilities into all aspects of church life including leadership, building an adaptive sailing program, and launching a company that provides affordable accessible housing units for sale or lease (www.roostsuites.com).

How has life changed since your diagnosis?

Living with ALS is obviously difficult, but I also have experienced many positive changes in my life. I have more time with my family and what I choose to do with my days is more aligned with my values. I have also stopped biting my fingernails!

In the forums you talk about the importance of doing what you love, like sailing. What do you like most about it, and what advice do you have for other pALS about following their passions?

I believe it is essential to find ways to enjoy those things that give you life, that uplift you. Always looking forward to something fun affirms that we are living with ALS, not dying of it.

I used to play many musical instruments, now we go to concerts. I grew up sailing, so I worked with industry experts to devise a way for functional quadriplegics to sail a boat on their own. This summer 5 pALS and 100 people with other disabilities were able to sail in our program. 4 of those pALS had never sailed before. It isn’t as hard as you might think, and we have great instructors.

Sailing is such a liberating sport. When living life in a wheelchair, mainly in a few rooms, the feeling of leaving the wheelchair on the dock and heading out into open waters, free to go wherever you want, is pure joy. It is also a great way to spend time with family and friends.

Sailing is all about working in harmony with nature to reach your goal. There is a saying among sailors “When the wind turns against you, adjust your sails.” I feel that is a perfect metaphor for living with ALS. We can’t change the wind, but we can still find peace and harmony. Sailing is good practice in finding that balance for me.

What’s it like managing multiple conditions?

Living with multiple conditions — for me, ALS and depression — is a daily exercise in a truthful self-evaluation of where I’m at, physically and emotionally. I’ve gotten much better at asking for help when I need it. We have found, too, that looking ahead to decisions down the road and staying mentally ahead of the diseases keeps us from feeling overwhelmed. Trying to make decisions in the middle of a crisis is a really bad idea for me.

 

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Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

………………………………………………………………………………………………………………………………………………………………………………

Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

………………………………………………………………………………………………………………………………………………………………………………

Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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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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Food for thought: healthy eating in 2016

Posted January 27th, 2016 by

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below:

“I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.”

-MS member  

“I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!”

-Fibromyalgia member

“My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.”

-Major Depressive Disorder member

“I’ve been gluten free since Sept. 2015. I have felt better. I have also added gradually, vitamins and supplements. The most important one being D3. I now am day 3 of 5000iu D3 daily. I also take Omega 3/fish oil daily. Added calcium, C Complex, magnesium, Acetyl L Carnitine, CoQ-10, and B, Glucosamine & Chondroitin. I’m better than I was, more energy, less pain, and IBS is way better. I’m saying this works for me. Consult your doctor before going this route. Looking forward to my best year in a very long time.”

-Fibromyalgia member 

“Since I found out I have MS and cut down on inflammation, I eat very little red meat and pork. Have also cut down on processed food and salt. Feeling better!”

-MS member

Do you have any goals for eating healthy in 2016? Share them with the community!

If you missed our other Food for Thought posts, check out the previous editions here.

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“It is definitely a daily challenge” – An interview with PTS member Holden

Posted January 11th, 2016 by

Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions.

We recently caught up with Holden, and here’s what he had to say…

Tell us a little about yourself. What are your hobbies and passions? 

So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later.

So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every day and it’s always there you tend to take the beauty that is around you for granted. I must admit though just about every sunrise and sunset is breathtakingly beautiful.

But lately, after I attended my first Soldier Ride with the Wounded Warrior Project towards the end of June of 2015, I really got into bicycling and that has become my main hobby and passion. It’s also kind of amazing how you change because I have started to notice that one of my passions is wellness. I know I need to work on my own personal wellness but I have started to be more passionate about wellness in general.

In your profile, you mention dealing with anxiety and depression in addition to PTS. What are the challenges of managing three conditions?

So even though I was initially diagnosed with PTS in 2011 and anxiety in 2014 it wasn’t until I spent a week at a behavioral health clinic in the middle of June of 2015 that I was diagnosed with all three. But being diagnosed with all three gave me some peace of mind. Well as much as you can with mental health conditions.

For me it seems like the cause of my PTS was several things that combined together. Between multiple different things from my deployment and then a couple months after I got back my home I was living in at the time was broken into twice in the same week. It seems to be very similar with PTS from what I have seen that people that have PTS tend to have anxiety and/or depression as well. It seems like what led to my diagnoses of PTS was kind of a snowball effect of different things, and it seems like PTS tends to be a combination of different conditions. For me it’s anxiety, and depression. That is what people tend to see of my PTS. My therapist that I have here in Colorado Springs told me that she sees me as having anxiety with no other symptoms which was rather aggravating because I knew there was other stuff. It is definitely a daily challenge.

I heard an analogy one time and I really liked it and I hope it doesn’t offend somebody but if it does I’m sorry but it has helped me with my PTS and stuff. PTS is like cancer, you treat it and work to get ride of it and once it is gone there is a lot of relief and you try to move on with your life the best that you can but in all actuality it seems like there is no 100% cure and that it is always in remission. There can be any number of different things that can happen and it comes back. Sometimes it comes back but is very minor and is easily managed and sometimes it seems like it comes back with a vengeance and tries to kill you.

What has your experience been like tracking your moods, quality of life, and PTS symptoms on PatientsLikeMe?

I have really enjoyed tracking my mood and quality of life when I make sure to update it regularly. It may sound kind of weird but when I put how I’m feeling that day or in the moment with a small description of what is going on then somehow I’m not able to lie, or make it sound not as bad. I’m blunt and sometimes brutally honest. Which is really nice and refreshing since I tend to lie to myself about how I’m feeling.

I know there is a way that you can print out how you have been doing to bring to your therapist but I haven’t actually done that yet. I guess I am still trying to tell myself and the world that everything is ok and that there is nothing going on with me until I can’t stuff my emotions anymore and I explode. I guess I’m still afraid of that stereotype that society has drilled into me that if you have mental health issues then you can’t be trusted around “normal” people.

 You mentioned journaling as a way of handling your anxiety. Do you have any other coping strategies for people with PTS, depression, or anxiety?

I really enjoy journaling. It’s kind of like another way of the whole mood tracking and quality of life tracking. I can’t really lie when I’m writing it down.

I did run into a little bit of a big question. I filled up one small notebook that I used. It’s small enough that it can fit in my back pocket so I keep it always with me. But then there is the thought about what if somebody gets a hold of it and uses what I wrote against me or reads it, what would I do? So I thought about burning it or shredding it so nobody would ever be able to read it. I talked about it with my therapist and I wrote a small disclaimer in the front cover that basically states whatever is in here was how I felt at the time and I have addressed how I was feeling have resolved it to the best of my ability.

But anyway bicycling has been my biggest go-to besides journaling. I have created a coping card that is small enough to fit in my pocket which would help if I actually kept it on me and looked at it constantly. But some of the things on it are talking with trusted individuals which unfortunately seems to be growing smaller and smaller. But anyway walking, deep breathing/quiet time, looking up inspiring quotes, reading my Bible, listening to music, taking pictures of nature, take a shower, use my stress ball, and getting to my safe place, and thinking, which might seem weird but tends to be in a tree. I don’t climb the tree but I find a pine tree that is full enough that if I walk far enough into it nobody will be able to tell that I’m there. I guess you could say hiding from the world and thinking.

What has it been like connecting with other vets on PatientsLikeMe? 

I have really enjoyed connecting with other vets on PatientsLikeMe. But I must admit more importantly than connecting with other vets is connecting with other individuals with PTS/anxiety/depression because even though everybody has their own story, you can end up in a darker place if you start comparing stories.

For instance when I was deployed I wasn’t allowed off base because I was an IT guy and kept the network for my squadron running and computers running. But with an accumulation of events while deployed and after my deployment I have been diagnosed with PTS but one of my best friends that I met here through the Wounded Warrior Project has a spinal cord injury, traumatic brain injury, and PTS from being blown up when he was out on a convoy in Afghanistan. He is worse off than me and I used to tell myself that he is the kind of person that deserves the help that I receive because he has seen and been through some much worse stuff than I have.

I don’t have a spinal cord injury, or a traumatic brain injury. But we help each other, I share with him some thoughts that I have that I must admit I tend to be ashamed of because they aren’t the kind of thoughts that I would normally have had before everything and more times than not depending on the situation he has had the same thoughts or if he was in my situation would have the same thought, and we challenge it together. Just sharing how you feel with another individual that might be feeling the same way or something similar no matter how different your stories are is a really powerful thing. So really the biggest thing is just the fact that you are connecting with somebody that has a similar diagnosis. Really, diagnosis doesn’t even really matter— just somebody feeling similar to you. Somebody that you can relate with.

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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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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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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.

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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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It’s time to recognize National Anxiety and Depression Week

Posted May 5th, 2014 by

We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety.

If you haven’t heard much about these two conditions, here are some quick facts from the Anxiety and Depression Association of America (ADAA):

 

  • An estimated 40 million American adults live with anxiety.1
  • Only one third of these people receive treatment.1
  • At any time, 3% to 5% of all people are experiencing depression.2
  • The lifetime risk of depression is about 17%.2


Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety.2 According to the ADAA, common anxiety symptoms can range from increased worry and social tension to extreme restlessness or general fatigue, and often, these symptoms can be magnified by depression.

Over 17,000 PatientsLikeMe members report being diagnosed with either generalized anxiety or major depression, including almost 7,000 who are living with both conditions. If you’re experiencing anxiety or depression, you’re not alone – you can share your story in the forum and find support on any topic. The PatientsLikeMe mood community is always ready to answer any question, no matter how complex, and members are always sharing their personal health data to help others just like you.

Finally, we mentioned it already, but Steubenville will soon be sharing about navigating the ups and downs of her bipolar II diagnosis on the blog in honor of Mental Health Month and National Anxiety and Depression Week. Keep your eyes peeled!

 

 Share this post on twitter and help spread the word for National Anxiety and Depression Awareness Week.


1 https://www.adaa.org/understanding-anxiety

2 https://www.adaa.org/understanding-anxiety/depression


“Mind your health” – Recognizing mental health in May

Posted May 2nd, 2014 by

This May marks the 65th anniversary of Mental Health Month, which has been observed by Mental Health America (MHA) since 1949. The MHA’s 2014 monthly theme is “Mind your health,” and it’s all about building public awareness for mental health and wellness while learning about the complex connections between the mind and the body.

According to the National Institute of Mental Health (NIMH), 26% of Americans ages 18 and older are currently living with a diagnosable mental health condition.1 That’s about 1 in every 4 adults. In fact, NIMH says that mental health conditions “are the leading cause of disability in the U.S. and Canada.” They can cause mood swings, anxiety, personality changes and more, and many times, the subtler emotional symptoms can be very tough to describe.

The mood community at PatientsLikeMe is more than 33,000 strong, and in addition to tracking symptoms and donating personal data through detailed health profiles, members are sharing their experiences in the PatientsLikeMe forum. People are talking about everything from sleep habits and mood research to favorite emotional movies, and they’re also sharing photos symbolizing how they feel. If you’ve been recently diagnosed, connect with others who are experiencing the same and know what you’re going through.

And if you’re looking for a few ways to raise awareness for mental health this month, check out some of the MHA’s suggestions below.

Don’t forget keep an eye out for a new monthly interview series next week. PatientsLikeMe member Steubenville will be sharing her experience with bipolar II in a three-part series, and part 1 will kick off Mental Health Month. Stay tuned for parts 2 and 3 later on this summer!

 Share this post on twitter and help spread the word for Mental Health Month.


1 http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/index.shtml


National Depression Screening Day and National Bipolar Awareness Day

Posted October 10th, 2013 by

Screen Shot 2013-10-08 at 11.46.51 AM

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

So what are the stats on depression?[1]

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

Here are the facts about bipolar disorder:[2]

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

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


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

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


Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Posted March 27th, 2013 by

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

Erica Psoriasis Patient CROPPED

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!