A few weeks after my diagnosis, what I remember really wanting (other than for the disease to just disappear, all by itself!!!) was to find other people living with the same problems; to feel less alone in the daily struggle with pain and physical limitations. And fear. I don’t like to admit it, but I was scared of what was happening to me, of the disease, of the treatment plan that my neuro-anaesthesiologist and I had agreed to, of “what it keeps spreading?”
I’d started a new job, on contract, as soon as the cast had come off my arm from the fracture – the trigger for the CRPS – and was having to take time work for medical procedures just a month later. The day I first met “my” neuro-anaesthesiologist (3 words I’d never had guessed would someday apply to me!), I was in the day surgery OR an hour later – completely unplanned. I was extremely lucky that my supervisor’s attitude was: “Your health comes first. Take the time you need to take for these treatments.”
But I was still worried that all these unplanned medical treatments would interfere with the new process/project that I’d been hired to launch, or that the disease itself would do that. I have an office job, so didn’t have to deal with physical work; I know now, looking back, that I just wouldn’t have been able to cope with a more physical job. Look for a post on symptoms to explain why…
Scared, worried, and feeling all alone in the world with this rare disease. It didn’t help that I’d often be jolted awake with pain flares in the middle of the night, or unable to get to sleep at all. Those hours between 0100 and 0400 were always the worst. I’d be in too much pain to read, which is usually what I’d do if I couldn’t sleep for some reason.
So I’d log on to Twitter and “lurk”; it’s a truly global platform, so there was always something going on. Lurking on Twitter is what you’re doing when you read posts – often live tweet chats or Twitter chats – without joining in, without participating. It’s not nefarious like stalking; sometimes it’s a way to see whether a chat or hashtag community is one you’d want to join, or to be associated with.
And I found people with the same rare disease that I (now) had. Right there, in public, on Twitter. I have a background in bioethics as well as privacy protection, and had been taught to protect personal health information (PHI in Canada or protected health information in the US). But these people using the #CRPS hashtag were openly sharing their conditions; tweeting about their symptoms, treatments, and disease issues, and engaging with others. Helping others.
It would take a while before I’d be comfortable sharing my own condition, and at the time I wasn’t sure whether I’d ever be able to “come out” with this disease in public. But six months ago I found somewhere to go during those dark hours when I was in pain, feeling scared, and not wanting to wake anyone up. It was a comfort, over several months, to lurk and read tweets written by others who were enduring the same disease challenges and disappointments that I was. That same overwhelming neuropathic pain.
Update: For CRPS Awareness Day 2017, on November 6, 2017, I’ve decided to make these posts public.
I’d been sharing them with a few other people with CRPS, and they’ve convinced me that these posts might help others with this horrid disease. If the Rare Disease portion of this blog helps even 1 other person, then it will have been worth it for me to make them public.