Chronic pain is a hidden disease. Many times there is no visible injury or impairment, but the pain is still very real. Because of this, many chronic pain sufferers hide their struggles and suffer in silence.
Not Crystal Lindell, the woman behind a site we love, The Only Certainty Is Bad Grammar. One morning, Crystal woke up with a stabbing pain in her ribs. Thus began her struggle to find answers and an eventual diagnosis of intercostal neuralgia. Intercostal neuralgia is pain and inflammation in the muscles and nerves between the “floating” ribs (the lower ribs not attached to the sternum in the front). This condition results in acute episodes of pain that are described as stabbing, tearing, burning, or ripping.
Intercostal neuralgia may be caused by the following:
- Injury to the mid-back
- Chest injury
Pain can intensify with sudden movements and even when doing something simple like laughing or coughing. This pain can be debilitating, and episodes can be long-lasting. For Crystal, even showering is so excruciating that she limits showers to twice a week, even when traveling for business.
The most interesting part of The Only Certainty Is Bad Grammar is Crystal’s frank discussions of what life is like with chronic pain. There are no platitudes or empty promises. With an openness that is refreshing and informative, Crystal offers up advice, opinion, and insight into daily living with intercostals neuralgia. She is a fighter and doesn’t always agree with the rest of the pain community. For example, she has this to say about coming to a place of acceptance regarding chronic pain:
“One of the things pain communities like to say over and over and over is that once you accept the situation you’ll find an inner peace…I don’t think you have to accept the situation. I don’t think you have to accept the fact that your life is now just one, long string of pain or that you’ll have to endure such pain for the rest of your life. I don’t think anybody should accept that.
I have accepted the fact that I can no longer drive long distances, swim, wear bras with underwire, or sit up straight for more than 45 minutes at a time. I have accepted that my life is different for now. But only for now.”
Crystal is also a strong advocate for more awareness of chronic pain. She believes that everyone should know more about what life is like with chronic pain, so much so that it becomes a visible illness in terms of awareness. In her own words:
“We need a world where I could tell someone, ‘I have chronic pain’ and they would immediately know that I’m going through hell. A world where people hear me say that and automatically ask if they can bring me dinner, donate to my medical bills, or drive me to doctor’s appointments.”
Because so few sufferers talk openly about their pain, it is hard for non-sufferers and even caregivers to truly understand what they are going through. Surrounding yourself with people who understand is not something that happens overnight. The key is to let them in and help them know what chronic pain is and what it feels like. There are a number of ways to do this.
Start a blog
The Only Certainty Is Bad Grammar is a great example of raising awareness by sharing a personal story. Blogs are one way to not only share your story with those close to you but to also offer help and resources to others who are struggling just like you. In addition to The Only Certainty Is Bad Grammar, we like other blogs like A Spoonful of Strength on Tumblr and How to Cope With Pain, a blog that offers tips and resources for chronic pain sufferers.
Check out Pinterest
It may seem counterintuitive to look at a DIY crafts site to raise chronic pain awareness, but Pinterest is a great place to look for support groups and other resources for chronic pain. Not only can you find an extensive collection of chronic pain blogs, but you can also locate doctors and look for treatment options in one place.
Go for a walk
Last year’s Walk to Cure FM (Fibromyalgia) was held on May 12th in Philadelphia, but if you missed it, head over to Google and search for a walk near you. Many chronic pain walks focus on specific chronic pain conditions, like arthritis, but all are focused on raising funds for research and awareness for understanding. If you can’t make a walk, show your support with a chronic pain awareness sticker.
On a personal level, take the time to find a way to talk about what you are experiencing with people who understand. If you are not comfortable sharing your story with the world via the internet, start keeping a journal to write down the highs and lows of each day. You may see a pattern to your pain that helps you understand your triggers better.
Some chronic pain sufferers find tremendous comfort in support groups, either in person or online. In person support groups are beneficial because the people who attend are local and can become friends who understand. Online resources offer anonymity and privacy, two things that may make talking about chronic pain easier.
No matter how you choose to share your experience, you should know that you are not alone, and that there is hope. As Crystal at The Only Certainty Is Bad Grammar says:
“I cannot give up hoping that one day I will finally wake up pain free. And you shouldn’t give that up either. Nobody should.”
Read Crystal’s five things she wishes she had known about chronic pain on The Only Certainty Is Bad Grammar, then tell us: what would you add to the list?
Image by L.C. Nǿttaasen via Flickr