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 which have 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.
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 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.
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, 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!
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 (IRL) life?
Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
On the morning of November 6th, in a suburb just north of Atlanta, GA, the students and teachers of Woodstock Elementary School arrived wearing orange in support of individuals living with Complex Regional Pain Syndrome/RSD. “It was a sea of orange today,” said Principal Kim Montalbano, who organized the awareness event.
Each November for CRPS/RSD Awareness month, people around the world participate in Color the World Orange, and this year, for the first time, the students and faculty of Woodstock Elementary School joined the cause!
My mother, a long-time teacher at W.E.S. was overwhelmed by the support shown to people living with severe daily pain and families affected by the debilitating neurological disorder, RSD/CRPS. When she arrived to work that morning, my mother was excited that the children in her own classroom would be sporting orange; instead however, she saw orange everywhere she looked! “It was a very emotional moment when I realized the entire school was supporting you today,” she told me that evening with tears in her eyes.
Many of my mother’s colleagues know that I have grown more disabled over the years, however she was encouraged to share my story in more detail on the 6th along with information on the condition that started it all:
I sprained my ankle when I was a healthy, active and focused 22-year-old; Complex Regional Pain Syndrome/RSD began immediately following the injury. The constant pain has spread to other parts of my body over the last 11 years and I now have several other disabling chronic illnesses. They say that RSD/CRPS is the most painful condition- more painful than childbirth or amputation, but people like myself don’t get a break from the pain. I have traveled to see specialists, I have stayed in hospitals like Emory and Mayo among others, I have utilized western medicine, alternative, and holistic type treatments and therapies. Because of the enhanced awareness in recent years, new treatments for RSD/CRPS are being developed so there is always hope for remission! Anyone can contract RSD/CRPS from a minor injury, but research shows taking vitamin C after sprain, fracture or surgery will reduce your chances by helping your nerves heal. It is an extremely difficult condition to manage, but a loving family, faith, online support groups, and doctors who truly care make a world of difference for people like myself.
A few of my mother’s co-workers shared that they struggle with their own chronic pain conditions and felt that no one understood what they lived with on a daily basis. A mother of one of the students wrote a note to my mom saying that she has had CRPS/RSD for years and has always felt very alone in her pain. She was so overwhelmed with the support of the entire school and was extremely grateful it was being recognized so near her home. She thanked my mother specifically for educating her child’s class on RSD and extended a special thank you to Principal Montalbano for organizing such a meaningful awareness event.
Several of the students tried to understand why wearing orange would make a difference. Some were disturbed by the idea of living every day in pain. One student asked my mother, “Can’t your daughter just take medicine to feel better?” Another asked his teacher how his orange t-shirt would help people in pain recover. His teacher explained that it wouldn’t, but for people like my mother and myself, his support would be “a very big deal.” He then felt compelled to run down to my mother’s classroom to show her his orange shirt, and to say, “I hope your daughter feels better soon.”
Because of this incredible awareness event at W.E.S., classes upon classes of children know what RSD is. Their parents, who read the memo and found them something orange to wear that day, are now familiar with the term “RSD”. Faculty who helped explain the illness all day will recognize it whenever they hear the term again. The next time a person they care for is diagnosed, it won’t seem like the most foreign illness on the planet and they will know treatment must be sought out immediately.
When I shared pictures of the children wearing orange to my Facebook timeline, my friends were so touched and inspired by this amazing gift of support. We all feel incredibly uplifted and deeply moved by the entire school of Woodstock Elementary. On behalf of myself, my family, and my extended family of survivors living with indescribable pain, thank you W.E.S. for your support, your kindness, and for raising awareness for Complex Regional Pain Syndrome/RSD.