Private. Hidden. Filtered. Isolated.
These are the adjectives that chronic pain patients use to describe the way they feel when they share their chronic pain experiences. Many believe that others won’t understand or will judge them when they talk about their chronic pain, so they hide what they are feeling.
This can lead to struggles with mental health; one study indicated that as many as 86% of patients with chronic pain also experience depression. It is difficult to mask your experiences from the ones you love and still remain upbeat and cheerful. Thankfully, technology seems to be catching up with this and offering comfort, solace, and a place to connect with fellow pain sufferers. In addition, technology is helping doctors and patients communicate more effectively so that treatment can be tailored to the condition. Here are three ways that technology can help promote good mental health for pain patients.
1. Real-time reporting
In addition to delivering breaking news nearly at the speed of light, technology has developed social media platforms ideal for patients who want to record and share their real-life experiences in real time. One in particular is ideally suited for its brevity and reach: Twitter.
Britt Johnson of The Hurt Blogger realized that even as she blogged about her chronic pain she wasn’t giving the full picture of her experiences. She vowed that for 48 hours straight she would use Twitter’s 140 characters to tweet whenever she felt pain, share the medications that she was taking, and talk about the mental health aspect of dealing with chronic pain. She used the hashtag #chroniclife.
Britt explains her reason for the 48-hour tweet marathon like this:
“I grew tired of feeling like I was still wearing a mask, of still feeling ashamed to share the true depth of what I deal with on a daily basis, of my honesty feeling like a complaint. I wanted to help people understand that we don’t simply take a handful of pills, and sometimes feel some pain. Chronic diseases are every moment, of every day. Every decision we make affects and is affected by our diseases.”
This type of social media sharing can be cathartic for the sharer and revelatory for the reader. Stanford University pain psychologist and author Dr. Beth Darnall believes that what Britt is doing can create a positive, supportive community for others who are facing chronic pain and the mental health challenges that come with it. He notes:
“Britt is using social media to share her story and allow others to feel connected and less isolated—this is a tremendous benefit to the pain community.”
Britt doesn’t want the campaign to stop after 48 hours and hopes to make even bigger changes in chronic pain treatment and understanding. She writes:
“My hope is that the tweets from the experiment and the hashtag itself will make its way into medical education. If you want to understand the constancy of disease, and attempt to briefly step into a patient’s shoes and understand the enormity and weight of a disease, follow the hashtag.”
For support and community on Twitter, you can find Britt at @HurtBlogger, or post using the hashtag #chroniclife.
2. There’s an app for that
Mental illness is a hidden disease, and a dangerous one. Those suffering from mental illness account for 90% of suicides, and often they are undiagnosed. This is partly due to the stigma of mental illness, but it is also due to the fact that once patients are diagnosed, treated, and released they struggle to integrate their treatment in real life.
New apps developed by Dr. Uri Nevo, research team engineer Keren Sela, and scientists from Tel Aviv University Faculty of Engineering and Sagol School of Neuroscience may change all that. Working from the idea that depression and mental health issues are based on a pattern of behavior, the team developed an app that tracks patterns in behavior and changes in those patterns. This might be helpful for quick intervention for a patient with bipolar disorder. Says Dr. Nevo:
“Bipolar disorder…starts with a manic episode. A patient who usually makes five or ten calls a day might suddenly start making dozens of calls a day. How much they talk, text, how many places they visit, when they go to bed and for how long — these are all indicators of mental health and provide important insights to clinicians who want to catch a disorder before it is full blown.”
To protect privacy, patients have full control over who gets to see their information, which includes changes in the frequency of texts and phone calls, sleep patterns, and vocal patterns. The content of calls and texts is never analyzed or recorded.
Early intervention is key, and two trials of the app have indicated that it helps doctors develop a better idea of when to intervene. One patient who was in the trial but then dropped out was hospitalized briefly afterwards and felt that the app could have potentially prevented that hospitalization. He told his psychiatrist,
“If I had kept the app on my phone, you would have immediately noticed the unusual number of phone calls I was making, and this hospitalization could have been prevented.”
The app could help serve as a safety net for patients and an easy way to monitor behavioral changes for doctors.
The app is not yet available for widespread use, but this technology could revolutionize the way in which mental health challenges are monitored and addressed. Doctors may soon be able to notice a change and head off a crisis with a simple phone call or office visit.
Another app developed by Dartmouth College is also helping to monitor student mental health as it relates to academic performance and behavior. TheStudentLife was developed and studied by senior researcher Andrew Campbell. This Android app monitors some student activity automatically around the clock. These include sleep, activity, number and duration of conversations, location, stress level, and eating. It tracks changes as certain stressful events loom (e.g. midterms and finals) and analyzes the information, finding that the data collected correlates strongly with student mental health.
There are many specific findings, but the goal of this app is the same: to promote early intervention and treatment for students who indicate they may experience mental health crisis – before it begins.
3. TED Talks
Finding someone who relates to your experiences can be the single thing that offers a spark of hope. TED Talks, broadcast around the world and available in an online archive, are a technology that connects mental health patients to let them know they are not alone. These seven talks ranging for four minutes to just under 30 minutes can be a technological lifeline for you or for someone you love.
What technologies have helped you or a loved one faced with mental health challenges to connect with and find community?
Image by lisaclarke via Flickr