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April 3, 2014
by Caleen Martin

Taking back control of chronic pain through social media

April 3, 2014 02:55 by Caleen Martin

Loosing control

One of the most difficult emotional challenges faced when diagnosed with a chronic pain condition is the feeling of losing control. The feeling that your body has betrayed you. I know this is what I felt when I was diagnosed with Fibromyalgia in 2011. I was a dancer and senior event and communications coordinator. This was not supposed to happen to me. It took time for me to find my way out of the bog of depression I'd gotten myself lost in. Then I began researching like mad to find all the information I could. Every treatment, medically, holistically and emotionally, I was going to learn everything I could and do something about my condition.  

What I found was not exactly what I expected. There really is not a lot of medical knowledge on Fibromyalgia. The medical field is slow to understand this condition, researchers are trying but how is that going to help me right now? So I turned to social media and support groups. I wanted to reach out to others and see what they were doing that worked for them. Again, nothing I didn't already know but the comradery of being able to talk to others who were facing my same challenges was helpful emotionally. At least for awhile. 

Online comradery

The more I interacted online with chronic pain communities the more I noticed the overpowering negativity being spread. Images and headlines, comments and discussions all revolved around the pain, the suffering, the depression. How doctors, family and friends don't believe us, how everyone accuses us of just being lazy. At first I went along with it all, screaming at the world about the injustices of our lot in life. Eventually though, I realized the toll all of this negativity was taking on my health both emotionally and physically. This is not what I wanted and I needed to make a change. 

Research has shown that negative emotions caused by situations, images or news essentially shut out the world around us and limits the options we see before us. These emotions are our survival instinct, but they do not serve us when dealing with a long-term challenge. Regarding chronic pain, limiting my options is the worst and last thing I want to do for myself. So I needed to retrain myself to only allow the positive imagery and news items into my life. This took time because I was so trained to react strongly to the negative images and news I saw online. 

Where's the positive?

It isn't that the challenges we face with chronic pain are not valid, because they are. It isn't that more education and understanding of chronic pain conditions isn't needed, because it is. And it isn't that these online communities are actively trying to keep everyone depressed and angry, because they aren't. However, as I really looked at the bigger picture I realized that these communities aren't speaking to people who don't have chronic pain, who don't have an understanding of the very real challenges we face. They are speaking to those of us who do know, who do understand; essentially they are preaching to the choir, so what was the benefit of all of this negativity?  

I wanted a community that dealt with the positive. Tips for taking better care of ourselves, articles on treatments and research being conducted that brings us closer to finding better solutions, a positive environment in which to ask questions, support each other and find information and resources. I didn't see one out there, so I created my own community on Facebook, Fibro Survivors United

I didn't want the negative things to leak through but I found that I didn't have to worry about that. Because I deal in only positive information the followers in my community react with only positive comments. I include articles, images, statements and resources on a wealth of areas as long as it keeps us all moving in a positive and healthy direction. So how does this relate to taking back control of our chronic pain?  

Chronic pain  patients can and often do feel like they have no control in their lives. We have to rely on doctors, medication, tests and treatments that aren't very effective. We have to rely on family and friends who don't understand to help care for us. We have to fight with insurance companies and social assistance for disability benefits. Everything around us seems to be in someone else's hands. But our attitudes, our thoughts and our reactions to what is going on around us is something that is completely and totally within our control. What we expose ourselves to can't be given to us in a pill or treatment, we control that. 

Attitude is everything.

I've found that my best days are those that I keep the positive in focus; my worst days are those when I have allowed the negative to creep in. It isn't quite as easy as snapping your fingers and all the negative just disappears but there are things that we can control and do to help keep us moving in the right direction. 

  • Stop focusing on the negative images and interacting in the negative discussions on social media. It is not worth your attention. 

  • Change your social media news feed to limit the negative feeds and include the more positive information that is out there. 

  • Make a gratitude list of all the positive aspects in your life. Include everything from having electricity to running water to medication that helps even a little bit. Then look at the list every day and keep adding to it. 

  • Try simple relaxation techniques like meditation, writing, reading a good book, stepping outside into the sunshine and deep breathing. 

It may not happen overnight but these changes can dramatically affect your emotional well-being and your ability to no longer suffer with a chronic pain condition but survive and thrive in spite of it. Just take it one day at a time and reach out to the positive communities who are there to help and support you. We are out there.

About the Author

Caleen Martin Caleen Martin

After being diagnosed with Fibromyalgia, Caleen Martin has dedicated herself to research and education on chronic pain. She encourages others to pursue the best life possible, in spite of physical challenges.

Caleen Martin can be found at
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