There has been a huge flurry of social media activity over on Twitter and Instagram so far today, for an awareness day, week, and month – and it’s only lunchtime! All this activity is for:
- CRPS Awareness Day #crpsOrangeDay (1)
- The first day of Canada’s National Pain Awareness Week #NPAW2018 (2)
- The start of CRPS Awareness Month #crpsAwarenessMonth (3)
These events are all interconnected for me by my rare disease, Complex Regional Pain Syndrome (CRPS). It’s is a neuro-inflammatory condition which causes – among other symptoms – chronic neuropathic pain.
The Canadian Pain Society (CPS) organized #NPAW2018 to raise awareness of pain conditions. And today the CPS once again demonstrated its “Patients Included” philosophy! How?
By posting information about my contributions to #crpsOrangeDay on the website for their own awareness week ‘-) Thank you, CPS, for including both of these on your #NPAW2018 site.
The first note they posted on their website was about my personal social media awareness campaign, using my own photos:
For this targeted chronic pain awareness campaign, Sandra Woods has created a set of original images to show Complex Regional Pain Syndrome (CRPS), formerly Reflex Sympathetic Dystrophy (RSD), in a different light.
Each image will have accompanying text, within the social media post.
The images use her own (one-handed due to CRPS) smartphone photos.
You can find these on Twitter with hashtag #crpsOrangeDay; orange because the colour of flames has been adopted by CRPS organizations to represent its burning neuropathic pain.”(1)
Here are a couple of examples of the images that I created, for these different awareness events:
The second note that the Canadian Pain Society included on their National Pain Awareness Week website was about a completely new form of disease awareness that I’d tried last year – an art exhibition!
For a completely different way to raise awareness of chronic pain, folks in Montreal can visit the McGill University Health Centre (MUHC) “Journeys through Health” public art exposition at the Montreal General Hospital.
Works presented are by medical students, healthcare professionals, MUHC employees, patients, caregivers, and a few professional artists.
This art show runs from October 2018 through the end of May 2019, in the hospital’s main hallway: Cedar Avenue, 6th floor Main entrance.”(1)
Back in May I was thrilled to be a Patient Partner at the CPS’s annual scientific meeting; its yearly conference. I was also a member of the conference’s “Twitter team”, sharing information presented at the conference with folks who couldn’t be there – particularly patients living with chronic pain.
The CPS is a group of physicians, healthcare therapists (including occupational and physical therapists), psychiatrists, psychologists, researchers, scientists, and other professionals who work with people in pain or study pain.
CPS members have recognized how important it is to consider patients’ own lived experiences in managing, researching, and treating chronic pain conditions – like CRPS.
This seems to be something that everyone working with patients should do, to take into account the disease experience of patients. But it’s uncommon, and deeply appreciated, to find a professional organization in healthcare that does just that.
Thanks again, CPS!
References
(1) https://www.canadianpainsociety.ca/page/NPAW
(2) https://www.colortheworldorange.com/news#contact
(3) https://www.burningnightscrps.org/event/crps-awareness-month-2018/