This week my social spotlight is shining brightly on rare disease patient advocate Ross McCreery.
Ross is the founder of CRPS (Complex Regional Pain Syndrome) Awareness Day in the Province of Saskatchewan, Canada. This is an initiative designed to educate and raise awareness for CRPS, a rare autoimmune disease which Ross was diagnosed with in 2006. His diagnosis of CRPS was followed a few years later by a secondary diagnosis of Osteoarthritis.
Ross is also involved in initiatives with the Rare Disease Foundation to help establish Peer2Peer support. He is a tireless advocate for research and treatments that he hopes will one day lead towards a cure.
Hi Ross, I’d like to start off by asking you to tell us something about the role that social media plays in your work.
RMC: For the last thirteen years I have lived with and advocated for the rare disease CRPS (Complex Regional Pain Syndrome). For those of us living with this disease, there are very few treatments, no cure, and very few resources. It is known as the most painful chronic pain condition there is, and some people refer to it as the suicide disease.
The basis of the work I do is to try and educate and raise awareness for this disease. The scope of my work is extensive from working with other patients and researchers to the healthcare system and government. I was successful three years ago in lobbying our government in creating a CRPS Awareness Day here in the Province of Saskatchewan.
I am also involved in various online projects the main being my blog called Painfully Optomistic which I started as a way to support, teach, and raise awareness for CRPS. And I work with organizations such as iPain Foundation ( NERVEmber ), Clara Health (BreakthroughCrew), WEGO Health (Patient Leader), and Color The World Orange to take part in numerous online initiatives that they run.
When did you start using social media – what prompted you to get started?
RMC: I started using social media within the first two years of my diagnosis for two reasons. One was because I live in a Province that has very little support for those of us diagnosed with CRPS. No physician in my city could diagnose me, and I went through two incredibly difficult years finally getting diagnosed in another province.
It was really the whole experience of how I had to be diagnosed and everything I went through that caused me to create my blog Painfully Optomistic. I didn’t want others to have to go through all of that, so the purpose of this site was to try and be a support at the same time as trying to educate others on what I already knew about the disease.
The other reason I started online though was because I needed a community around me that I didn’t have that at the time. Getting involved in communities on Twitter, Facebook, and through my blog gave me that. I now have a network of not only patient/advocates but friends who I can rely on for support and to ask questions when I need to.
I think that feeling of isolation, particularly when you are a rare disease patient, and the desire to be part of a community who really “gets you” is a big motivator in many patients and advocates turning to social media. You’ve mentioned your blog along with Twitter and Facebook communities as key resources for you. Which of these is your preferred platform to communicate on?
RMC: The platform that I seem to use the most is Twitter. Although I am using Facebook more and more as I become more involved in my advocacy work. I tend to use the Facebook Live aspect of the platform the most. These platforms allow me the opportunity to come together with other patients/advocates, medicals professionals, and caregivers to grow and learn from one another.
This kind of peer-to-peer learning is a vital part of online advocacy. How about health-related twitter chats? Are there any regular chats you take part in?
RMC: I participate in regular chats such as #wegohealthchat, #PatientsHavePower, #patientchat, #CreakyChats, and sometimes #hcdlr on Twitter. All of these chats allow me to be a more effective and empowered patient leader through learning from a variety of perspectives. I can stay informed on new treatment options, clinical trials, or even how to work with medical professionals as part of working towards a common goal which is to find treatments and cures.
It isn’t really about being interested in just one thing but what can I learn from these different patient/advocates, professionals, caregivers, or whoever it might be. It’s about “how can I change things within myself and the work that I do to better help others including myself”.
Social media obviously plays a vital role in your advocacy work so what advice would you give to others who are just starting out with social media?
RMC: The advice that I would have for someone starting with social media is to really think about what your needs when it comes to social media. Start by using the form of social media that is going to best serve your needs. The social media world is huge and we don’t always need every platform that is available to us. Ask yourself why you are using that platform? Are you using it just because everyone else is? Or does it really serve a purpose for what I really need it for? Streamline and make sure that you are using that platform effectively and that your message isn’t getting lost.
I really like this advice Ross. It’s easy to feel as if we need to be everywhere at once to make an impact, but knowing where to be to make maximum impact is more important.
So, I like to end these interviews by asking for a favorite quote. Do you have one you’d like to share with us?
RMC: One of my favorite quotes:
Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it
What a great quote! Thanks so much Ross for taking the time to share the many ways in which you are making a difference using social media.
If you’d like to learn more about the work that Ross is doing in raising awareness of CRPS, you can follow him @Rossco006 and check out his blog, Painfully Optomistic.
This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.