This month I’m a Team Captain for a 4-week workplace fitness challenge. I’m working in bioethics (medical ethics), at a global company, and this team-based lifestyle contest is open even to contract employees.
There are small prizes up for grabs, like t-shirts and gym bags, and it’s a fun way to interact with other employees and contractors around the world. The goal is to encourage each of us to be more active on a daily basis, and to share tips on everything from exercise to healthy recipes.
What may be surprising to many – including me! – is that I’m a team captain for this global fitness challenge. Despite the fact that I’m dealing with a rare neuro-inflammatory disease affecting my right (dominant) arm and hand.
I’ve been dealing with this disease for over a year now (resulting from an injury on March 3, 2016), and had to wait almost 3 months to get a diagnosis. For the first few months after my diagnosis, the only people I told about it were my immediate family, close friends, and the few colleagues I work with on a daily basis.
Because a large part of my background has been in patients’ privacy protection, so I was very hesitant to post any information about my diagnosis – my rare disease – on-line.
In the months after I was diagnosed, I spent a lot of time researching this disease, and almost coincidentally connected on-line with others who were living with the same CRPS-related issues. Those connections were so helpful and supportive, at such a difficult time for me, that I decided to put aside my privacy concerns and post publicly about CRPS (see the posts “Lurking” and “Go public?”).
My attitude was that if other rare disease patients had provided on-line support, shared tips for dealing with everything from diagnosis to medical records to symptoms, and helped me deal with my own diagnosis, then maybe I could help someone else the same way.
I’d already been sharing articles and news items – from medical and scientific journals, hospital and university research reports, etc. – to social media for years; about bioethics, healthcare, and patients’ privacy and rights. So I started also posting articles and news items specifically on rare diseases in general, on my disease, on patient experiences, on issues in healthcare situations, and on – well, you get the idea!
I really don’t consider myself to be a rare disease “advocate”, but some of my Tweeps (connections on Twitter) have told me that I am. Whatever label you want to use, I’m trying to raise awareness of rare diseases, and particularly for the rare “invisible diseases”.
These are rare conditions in which a person looks fine, but in reality is suffering with symptoms and consequences of a disease. These often involve extreme fatigue and weakness (due to immune system issues), severe pain (in my case both joint and neuropathic pain), and a host of other dysfunctions that can make simple tasks exhausting – and sometimes even dangerous.
As for the fitness challenge, its platform is something like a health-based version of Instagram, to post fitness photos, share updates on activities, etc. So I’m already planning to share some of my favorite ‘chair yoga’ and ‘stand at your desk’ yoga flyers.
I’m also thinking of posting something about this disease on the platform, to raise awareness of CRPS. Who knows, it could help a global colleague to figure out what’s happening to them or to a loved one… If I do post something there, I’ll post it here as well!