The onset of my fibromyalgia came on gradually, as my symptoms snowballed over an 18 month period. I tried everything to accommodate my pain and fatigue so that I could continue my graduate school program, but I just couldn’t keep up. After I received my diagnosis, I finished up the term, and officially withdrew from school. I woke up the first day after submitting my final term paper, and felt like I was standing on the edge of a cliff – I was 26 and my career was over before it had begun.
But my immediate problem wasn’t that my future remained uncertain – it was that I had no idea how to fill my days. I had no routine, no tasks to accomplish, and no friends or colleagues to share my experiences with. I was alone all day until my husband came home from work. Anyone that I wanted to socialize with (when I was up for going out) could only meet me in the evenings, after the work day.
I struggled to fill all these hours on my own. I remember waking up late one morning and thinking “good, now there’s less time to wait until my husband comes home.” In retrospect, I think that says a lot about how I saw my day: as time wasted.
I became painfully aware of what I was missing in life. You need to make connections with people beyond yourself. You need to feel like you’re contributing to the world around you. All of those things felt impossible when I was stuck at home by myself. Psychologists refer to this as self-determination theory – that all people have three basic psychological needs for emotional well-being (Very Well Mind):
- autonomy: being the author of your own story, making your own choices
- competence: having a sense of accomplishment, learning new skills
- relatedness: feeling connection and attachment to other people
Fibromyalgia can obstruct our ability to meet these needs. We lose our ability to work as hard as we did before, which limits professional accomplishment and a sense of competency. Unpredictable symptoms dictate daily life and can take away any feeling of control over your life, which is necessary for autonomy. Being stuck at home alone and/or less able to socialize can lead to isolation and a loss of connectedness.
But it doesn’t have to stay that way. Over time, I learned that connecting with others by sharing my story online is a powerful way to begin meeting these needs for emotional well-being. In fact, research demonstrates that “autobiographical storytelling” can have “substantial impacts on psychological and physical health even months after” (Hamby, 2013). In this piece, I want to share how blogging and social media have helped me to find a sense of purpose, belonging, and connectedness.
One day shortly after my diagnosis, as I was googling strange fibromyalgia symptoms (which should be listed as a hobby for people with chronic illness), I stumbled on a list of top fibromyalgia blogs. Clicking through them, I felt a sense of connection with other people who understood what I was going through. It was validating to hear about other people who shared my experiences.
By following these blogs, I learned about tips and tricks for everyday life with fibro, caught up with research into the condition, and most importantly benefited from the wisdom of other people who were open and vulnerable enough to talk about their journey through grief, acceptance, identity, self-care, faith and all the other challenges of living with fibromyalgia.
Eventually, I decided to start my own blog. I didn’t have a lot of followers, but that wasn’t really the point. I interacted with other bloggers, and it was in those reciprocal relationships of reading and sharing that I found a sense of connection.
Social media gets a bad rap because of trolling, scheming Russian bots, and creating the false image of a perfect life. But your faith in humanity can be restored by the kindness and support chronic illness worriers show each other on social media – in Twitter chats like #SpoonieSpeak and #SpoonieChat, on closed Facebook support groups, and on fibromyalgia forums (for a detailed list: https://goo.gl/EJLvZT). Social media can help people with fibromyalgia meet their psychological need for connection and relatedness.
Of course, spending too much time on social media can be overwhelming. If you are going through a difficult time, the online community can provide a lot of support, but reading about other people’s problems can be too much sometimes. It’s important to be kind to yourself and unplug when you need to!
Putting your health journey into words, whether on a blog, on Twitter, or in a private community, is a powerful act of self-care. I find that putting my story into words helps me to identify the key lessons I’ve learned, to reflect on what’s most important to me, and to find my truth. Getting it out there is cathartic and reading back my own words gives me a new perspective on what I’ve gone through. Even in writing this piece, I see how far I’ve come since my diagnosis, and I feel proud of that.
When I first started my blog, I didn’t know what to share. I wasn’t sure that I had anything important to say! I wrote about everything from book reviews, new recipes, research on fibromyalgia and bad doctor’s appointments. Even though I was all over the place, it gave me a sense of accomplishment to publish a post.
Over time I narrowed down my writing interests and decided my blog’s focus would be about navigating the challenges of fibromyalgia using self-care skills. I became more comfortable being open about my feelings and experiences. This can apply to vlogging, tweeting, and other forms of social media too. In other words, I found my voice. This process was an inner journey, and it deepened my relationship with myself. I feel much more like the author of my own story, and am closer to meeting the psychological need for autonomy than in the early days of living with fibro.
Finally, I learned that sharing my story and the insights I’ve gained from my experiences can help others. Nothing brightens my day more than a comment from a reader that something I’ve written has resonated with them, validated their own experiences, or given them a new idea or approach for tackling a problem. Hamby (2013) explains that your “resilience is strengthened by recognizing that we are all experts in our own lives and we all something to share with others.”
One of the things I enjoy most about Twitter is the random acts of kindness from users sending positive thoughts, gentle hugs, and spoons to a member of the fibromyalgia community who is having a bad day. This was an unexpected and lovely benefit that began with sharing my story online. Being able to provide connection and support to others can give you a sense of contributing to the world beyond yourself. It’s an important sense of purpose that many of us find missing developing this difficult condition. In this way, blogging and social media can help people living with fibromyalgia meet their psychological need for competency – a feeling of accomplishment and contribution beyond ourselves. While sharing your story doesn’t take your pain or fatigue away, in my experience it can start you on the road to improving your emotional well-being despite the challenges of living with fibromyalgia.
Fibro Women Blogs
Chronic Woman Blogs
Chronic Illness Blogs
Official Fibromyalgia Blogs