When Britt Johnson started a blog, she thought she would use it as a way to explain her chronic pain. Chronic pain is a hidden disease, and many who experience chronic pain feel isolated and lonely. Even the people they live with have a hard time understanding what they are going through. Britt thought an honest blog would help her family and friends understand and maybe help others to communicate with their loved ones, too.
There was only one problem: she realized that she was still masking her feelings and not being 100% open. And that’s how #chroniclife was born.
Britt explains it this way:
“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.”
She decided that for 48 hours she would tweet:
- Every time she felt pain
- Every medication she takes
- Every aspect of chronic pain, including the aspect of mental health
A sample of tweets from this period include:
11:07 a.m.: Just woke up, not wanting to move, because then I’ll feel the pain in my body. The last thing I want to do right now is tweet. #ChronicLife
12:40 p.m.: The thing I feel most don’t realize is my day is reversed due to stiffness/pain. I rest in mornings, and work in afternoon. #ChronicLife
12:59 p.m.: Right now, its easier not to eat, than to deal w/ exhaustion/pain/stiffness of making food. THO, I’m pushing myself to get up. #ChronicLife
After not being able to eat until three hours after waking up due to pain (and then only a smoothie), Britt records pain that stops her in her tracks:
1:40 p.m.: Stopped in my tracks again by waves of pain. Shoulders, elbows, fingers, jaw. #ChronicLife #ChronicPain
Throughout the 48 hours, Britt tweeted when pain interrupted every day life (usually at least once every 45 minutes). She tweeted about the struggles chronic pain patients face for the smallest thing (e.g., dust triggering a migraine, dodging kids running in a grocery store, exacerbating pain by clenching the jaw due to stress, etc).
Throughout the course of the #chroniclife project, Britt noted how whiny she felt, but imagine facing this every day. Waking up with fingers so stiff that you cannot brush your teeth and pain so intense that making food for yourself is impossible. Dealing with knowing you are running out of the energy necessary to clean up after yourself and resorting to disposal utensils.
But Britt’s work is crucial. It spreads hope and community throughout a group of people who often lose both. There is a reason it is called “social” media, and research supports the idea that health, both physical and mental corresponds to the strength of social ties.
Recent research on the subject includes:
- A study published in the Journal of the American Medical Association (JAMA) found that strong social ties helped fight off colds and flu.
- Carnegie Mellon University found that loneliness and social isolation reduced immunity to infection.
- Strong social connections are a positive force for managing stress. Stress can exacerbate pain and make it feel more intense.
- Strong social and familial ties increase the chances of success for someone battling wth substance abuse issues.
- Men who have a strong social connection are less likely to commit suicide than men without those ties.
- Even countries and whole communities are better able to deal with a crisis when they have a strong sense of national or regional identity.
Twitter and other social media outlets where hashtags like #chroniclife are used to group topics together under common interests qualify as a community. The idea behind social media is to not only build awareness but to also help those who are suffering to feel supported.
Online social networks are easy to use and available wherever you can get an internet signal. Sometimes “talking” to an impartial person who knows what you are dealing with can make it better, even moreso than talking to family and friends who may be exhausted and frustrated as well. Getting started on Twitter is easy:
- Sign up for an account on Twitter: This is easy and only requires an email. You can personalize your account with a picture, or remain anonymous. You do not have to use your real name.
- Follow The Hurt Blogger: Britt has just under 6,200 followers and over 20,000 tweets, so there is a lot of material to pull from.
- Do a quick search for tweets that use the hashtag #chroniclife: You can also search by subject or person.
- Start reading, responding, and following: Following people whose tweets speak to you is a great way to begin to build your online community. When you follow them and they follow you, you can even send them a message directly. You can also tag someone who isn’t following you by mentioning them in your tweets using the “@” symbol.
For a quick tutorial on how to use Twitter, take a look at this YouTube video.
It is important to remember that as supportive as Twitter can be, it is not a moderated space (in general—some people moderate their tweets). Those suffering from a chronic condition like chronic pain can be especially vulnerable, so it is important to take the following steps to protect your privacy:
- Don’t give out personal information, either in a tweet or a direct message.
- If it makes you more comfortable, you do not have to use your real name or set up a location when you create your account.
- Feel free to block users who are abusive or make you uncomfortable. They can also be reported to Twitter.
Britt started the #chroniclife hashtag to spread awareness and cultivate community on Twitter. Do you utilize any other social media for support and community?
Image by Ken Lee via Flickr