November first kicks off Color the World Orange month, otherwise known as CRPS/RSD Awareness Month!
So much awareness has been raised over the years for our cause. It’s incredible how far we have come when I think of the increase in education, research, social awareness, physician availability, and treatment options developed over the years; it makes me proud to be among my fellow CRPS advocates and pain “warriors.” The CRPS community has grown tremendously in the last 14 years compared to where it used to be, largely thanks to social media.
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, we 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 over the years, and I’m reminded of the importance every voice has. We make strides by working together each November.
Everyone’s voice matters. Every single story matters. Your story is unique, and can 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. Instead of simply typing CRPS, go the extra mile to spell out Complex Regional Pain Syndrome so those in your life can personalize it, and make no mistake that this is is indeed a complex pain condition you and others are living with.
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 scroll past.
5. Have a mission.
What is your personal awareness goal this month? Whether you choose fundraising, sharing your personal story, including 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.
The first Monday in November is Color the World Orange Day, when we ask our friends, family, and communities to wear orange and share their photos to social media!
Between Instagram, Twitter, Facebook, Pinterest, Tumblr, and the blogging communities, there are so many cute events and ways to get involved this month.
Let us know what events you’re getting into 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 in our community 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 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, more critical research, and we hope with more awareness, this unbearable suffering will be cured.
10. You are brave!
Don’t forget how courageously you live with your pain, and overcome every-day obstacles that no one even knows about.
It can be difficult to be vulnerable and discuss our pain, especially when we are used to comforting others so they can feel good 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 😊
What are your tips for raising awareness in your daily life?