10 Ways to Raise Your Voice for CRPS/RSD Awareness Month
November kicks off Color the World Orange Month, otherwise known as complex regional pain syndrome/ reflex sympathetic dystrophy CRPS/RSD Awareness Month.
So much awareness has been raised over the years for our cause. When I think of the increase in education, research, social awareness, physician availability, and treatment options that have developed over the years, it makes me proud to be among my fellow CRPS advocates and pain “warriors.” The CRPS community itself has grown tremendously compared to where it used to be. I can’t imagine living in the same body and having no online resources, no diagnosis, and no community of fellow survivors. Without those advocates who went before us, people would still be facing this unimaginable pain alone. Sometimes I get discouraged by the challenges our community faces, but then I remember what these awareness campaigns have accomplished, and I’m reminded of the importance every single voice has. We make strides by working together each November.
Everyone’s voice matters. Every single story matters. Your story is unique, and can help change lives.
During awareness months like Color the World Orange, sharing your story is amplified by the thousands of people sharing theirs simultaneously.
Here are 10 tips for raising even more awareness in every post you share this month:
1. Write out “Complex Regional Pain Syndrome.”
Many don’t know what CRPS or RSD stands for, much less what it means. We often take for granted that our friends and family know that it’s an incurable, degenerative neurological disease, but most people can’t differentiate one chronic pain condition from another. “NERVEmber” is the perfect opportunity to educate those in your life on your condition.
2. Make your awareness posts public.
This way anyone can easily share your posts and support you.
3. Make it personal.
Your friends know and love you, and will remember more about CRPS in the long run if you share details and images from your own personal journey.
4. Make every post count.
Even when you’re reposting a great awareness poster or video from another page, first take a moment to add your own personal caption. Your friends will be more likely to stop and read your words, instead of scrolling past.
5. Have a mission.
What is your personal awareness goal this month? Whether you choose fundraising, sharing your personal story, medical facts, treatment options, or petitioning for the opioid crisis/chronic pain epidemic, if you choose one focused approach on social media, you can make a bigger impact in a shorter period of time.
6. Use hashtags and tags.
For example, adding #colortheworldorange to your posts can help others in the CRPS/RSD community find you.
Tagging a group of friends to a post is another great way to connect to your community during awareness month.
7. Participate in awareness events.
Monday, November 5th, 2018 is Color the World Orange Day, when we ask our friends, family, and communities to wear orange and share their photos to social media.
There are so many events and ways to get involved this month across social media and the blogging community. Let us know what events you’re getting involved in this November.
8. Don’t lose momentum.
Try to take advantage of the entire month of November. Have fun, but pace yourself, and make self-care a priority so you can participate throughout the full CRPS/RSD awareness month.
9. Be an ambassador.
If you have the ability to get online and share posters, or tweet status updates, think of yourself as a representative for those who cannot. You are advocating for people who don’t have a voice, for those whose fights have come to an end, and for all of the individuals who might be diagnosed with CRPS/RSD in the future.
Awareness campaigns today lead to future recognition of a rare disease, early diagnosis, early intervention, hope of treatment options, more funding, more education and more critical research. We believe by raising more awareness, this unbearable condition will be cured.
10. You are brave!
Don’t forget how courageously you live with your pain, and overcome everyday obstacles that no one even knows about.
It can be difficult to be vulnerable and discuss your pain, especially when we are used to comforting others so they can feel assured that we are OK (even when we aren’t).
You are not complaining when you share your reality. You are not a burden just because you are burdened by pain. Your friends share their lives; there is no shame in sharing this important aspect of yours also.
I hope you have a fabulous NERVEmber. I’ll be looking for you in your orange!
This story originally appeared on A Body of Hope
Mary is a bed blogger, pain patient advocate, and art therapy proponent. Fifteen years ago, she was diagnosed with CRPS at age 22. Mary now also lives (very quietly) with daily Intractable Migraine, Cluster Headache, the fainting disorder POTS, Dysautonomia, CFS/ME, Pseudo tumor cerebri, multiple sensitivities, sensory neuropathy, and CSF leaks. Though she lives her life from a horizontal position, she keeps herself busy. She began the hope-based Facebook support group Living with RSD, and the creative corner, Chronically Inspired. Mary is an online activist for health and human rights, and loves raising awareness for chronic illness issues on her blog, abodyofhope. She studied psychology and professional writing in college, and has been grateful to utilize her experience for projects in the chronic illness community. “HOPE is the most important aspect in surviving unspeakable pain and illness. It is what takes us from suffering to surviving.”
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