Receiving a diagnosis of a chronic condition it is often a big shock—even when it comes after an extended period of symptoms. These symptoms a person has been experiencing for a finite period of time (onset to diagnosis) now stretches into the future. Together with the difficult-to-pronounce terminology and over analysis of Google search results, it can be a very confusing and frightening time.
With diagnoses come an onslaught of information about what is happening in one’s very own body. Once diagnosed, patients can often go through a difficult period of grieving for their pre-symptom life before reaching a point of acceptance.
One step beyond that is the need to keep a positive outlook while living with chronic symptoms—something I’ve experienced with my own diagnosis of ankylosing spondylitis. In the coming weeks, I’d like to share my thoughts with you as a person living with a chronic condition. Starting today with the internet’s role in a chronic patient’s life.
Google is one of the greatest tools in my life, including when it comes to learning about my condition. But if I believed every search result that popped up when I queried a symptom, I would be a terrified mess; convinced my diagnosis would soon be followed by dozens of even more serious ones. Particularly as patients, we all need to be able to read Google results for what they are—a diverse range of other human beings’ opinions and experiences, collated by an algorithm.
This cautious approach also rings true for online communities—I belong to several Humira ‘groups’ on Facebook, and I continue to use our MyViva community as a patient rather than a Community Manager. Interacting with fellow patients online has been the single greatest step for me in my own journey as a patient; I feel the “real life” friendships I have developed from these online interactions have been even more significant to my wellbeing than my most effective medical treatment.
However, in Facebook pages or even private groups, the range of people joining in a conversation can be extremely diverse and provides a huge variety of experiences and opinions. This can be fantastic for opening patients’ eyes to alternative viewpoints and treatments, but advice and experiences shared also need to be taken with a grain of salt.
Recently, I saw the broad social media advice of “don’t compare your behind-the-scenes with other people’s highlight reels”. But when it comes to patient communities for chronic conditions, I’ve found it can often be the opposite that is true. For many patients, these online communities can be the one place where they feel they can share with others who truly understand. Amongst fellow patients, they are going to be focusing on those more difficult “behind-the-scenes” aspects of their lives that those on their Facebook friends list probably don’t get to see.
The MyViva community’s nurse presence is a fantastic reassurance that the advice and experiences being shared there can be supplemented by nurses weighing in with their professional advice, and in all online communities the presence of a community manager or moderator is vital for keeping community members engaged and keeping discussion on a relevant path.