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Posted by on Nov 27, 2016 in CRPS / RSD | 0 comments

Go public? (27.11.2016)

Go public? (27.11.2016)

For a few weeks I’d been lurking on Twitter (see Lurking), reading about other people with the same medical condition, and feeling less alone with this rare disease*. And probably a bit less apprehensive, even downright scared, to be honest. But I still wasn’t joining in; I was still hesitant to admit, in public, that I had this nasty disease.

What finally had me leaning towards speaking up, joining the conversation on-line, was the idea that my story might help someone else. Whether by showing them that there were other people living with the same disease, or another person who’d struggled to get a diagnosis, or was having difficulty deciding which treatment path to try first. The same way that those first folks I’d found with CRPS/RSD, on Twitter, had helped me feel connected to others in the same situation.

Photo of a patient wearing a hospital gown

Photo: Sandra Woods

But I hadn’t planned to “come out” with this disease in public, on Twitter; have I mentioned that I’m on that platform daily, for bioethics and privacy, as a news source, and to connect with friends? I was just thinking about mentioning the disease to a couple of friends on Twitter, or “tweeps”, and gauging their reactions…

For well over a year I’d been participating in a weekly tweet chat, which has a community feel due to the moderators as well as to the high number of regular members. It’s the #HCLDR tweet chat, “a strong and vibrant online community of people who all share a passion for improving healthcare. Our community includes patients, physicians, nurses, CEOs, IT folks, caregivers, policy makers and students from countries such as Canada, USA, Philippines, Ireland, Australia, New Zealand, Singapore, UK and South Africa”(https://hcldr.wordpress.com/about/).

One night during that chat, a comment or question came up about patient experience; I don’t even recall any more what the tweet was about, or who wrote it. But I replied that I’d recently been dealing with a rare disease myself, and had struggled to have my symptoms taken seriously as well as to obtain a diagnosis.

The response from so many members of that chat was phenomenal, and very supportive. The next day I started joining conversations on Twitter about CRPS/RSD, and reaching out to others with this disease. I soon realized that because I live near a large city with medical schools, health centres, and affiliated teaching hospitals, I sometimes have access to treatment options that aren’t available or offered to people in other areas.

Photo of tree beside a shoreline

Photo: Sandra Woods

Some of these folks have since reached out to me for treatment details, brought them to their healthcare providers for discussion, and been referred to healthcare centres that can offer some of these procedures. In 3 cases so far, these folks have had improvements in their symptoms; one had been off work for almost a year and was able to go back to work (part-time to start, but he’s planning to return to full-time as I write this).

And 2 others, in 2 different countries, on 2 different continents, have told me that they were able to obtain diagnose and medical treatment based on information that I’d provided. It’s been very rewarding to be able to help others, and I think that’s helped me come to terms with this disease. I still hope that my CRPS/RSD will spontaneously resolve, but am starting to accept that it’s not likely to happen.

I’ve also found it helpful to be part of a community of others with #ChronicPain and/or #RareDisease, living a #ChronicLife, on Twitter. We share treatment and research news, and offer support to each other during difficult times. It sounds silly, but some days it really does help to connect with someone else living through the same issues with this disease – even if that connection’s only on-line.

I still believe in the importance of protecting PHI (personal health information in Canada; protected health information in the United States) at an institutional and organizational level. But an individual patient can choose to share some – or all – of that information themselves. It’s important to consider the risks of doing so, and particularly the future risks (e.g. risks for future health insurance in the United States), but the decision is up to the individual.

For me, although I’m sharing information about CRPS on Twitter, I don’t yet feel comfortable sharing these blog posts – except with the few of you I’ve given access to, of course!

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* The disease is called Complex Regional Pain Syndrome (CRPS), often referred to it by its old name; Reflex Sympathetic Dystrophy (RSD). (Read It’s CRPS Awareness Day 2016 or It’s CRPS Awareness Day 2017 for information about CRPS.)

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.

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