10 Easy Ways to Raise More Awareness during: CRPS, RSD, Nervember, November

Hi friends!
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 canโ€™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 ๐Ÿ˜Š

>Here and >here you can find original awareness posters to share. And here are more articles about CRPS with personal stories by survivors. Or, see the “Categories” drop-down menu to the right.

What are your tips for raising awareness in your daily life?

About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 15 years living with chronic pain, patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)

Posted on November 2, 2018, in advocacy, RSD/CRPS, Uncategorized and tagged , , , , , , , , , , , . Bookmark the permalink. 4 Comments.

  1. thank you. for being here. for posting your experience. it helped me. Im not sure if it helped a lot, but in this moment it already helped me so much! actually stopped thinkin about the negative stuff. thanks for helping to recognize that Im a warrior. and have to keep fighting this war. because life is worth it. I usually donโ€™t have much to say but I would love to just be around you. enjoy some company of someone who knows what fighting your own very bad thoughts means. because im too proud and anxious to talk to others about how i really feel. i appreciate that you are here and helped me. and others.
    I hope that you are doing fine these days.

    thanks!

    Liked by 1 person

    • Your comment means so very much. I wish we could visit together also! I suppose this and the support groups are my way of “visiting” with people like you who understand ๐Ÿ˜Š
      It’s a lonely life. But it doesn’t feel so alone with the community and making friends online who “get it” like you do!
      You are definitely a warrior.
      If anyone in pain reads my post, I think reading your comment will probably mean just as much. Your words mean a lot to me, and I hope you’ll keep sharing even if it’s in an anonymous way, because what you have to say I think would resonate with people out there.
      Take good care of you.
      Hugs

      Like

  2. Great post Mary and happy awareness month kick off!! ๐ŸŠ๐Ÿ‚๐ŸŽƒ๐Ÿ˜ป๐Ÿ’ฅ๐Ÿ’ƒ๐Ÿฏ๐ŸŽ๐ŸฆŠ๐Ÿน๐Ÿฟ๐Ÿฆ‹๐Ÿ๐Ÿ‘๐Ÿฅ•๐Ÿฅš๐Ÿ ๐Ÿ›๐ŸŒ‹๐ŸŒˆโ›บ๐Ÿš‚๐ŸŒ‡๐ŸŽ๐Ÿ€๐Ÿ๐ŸฅŠ๐Ÿ”ฆ๐Ÿ“™๐Ÿ”…๐Ÿ‰๐Ÿ”ถ๐Ÿˆธ๐Ÿ‡จ๐Ÿ‡ฎ ok and that’s the end of my orange emoticons ๐Ÿ˜†

    Liked by 1 person

  3. Thank you! I love all of the orange emoji’s, Claudia!๐Ÿ˜‚ ๐Ÿงก๐Ÿงก๐Ÿงก

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

A Complex Life

Living with Complex Regional Pain Syndrome

Get More Resilient

Our resiliency has limits, but we can always become more resilient.

My Life: Beauty Love and Chaos

Blog, Poems and Short Stories by Becky Allen

DeltaLifes.blog

HEALTHY LIFE, BRAIN & SUCCESS...

Tea With Jennifer

A time to reflect...with a cup of Inspiration

Fightmsdaily

Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

Miss Diagnoses

Life with assorted ailments

Pain Management Specialist in San Diego & La Jolla

Pain Specialist treating Intractable Pain & Treatment Resistant Depression

Twilight

( writer )

Nosy Parker Blog

musings of a curious creative

Susan Sleggs

Flash Fiction and personal thoughts

Doss Doc's

Father Figure for Hire

%d bloggers like this: