Communities: Not just a place to find support, but a place to express identity
Earlier last summer, I attended CMX Summit East in Brooklyn with the Community Team at Health Union. It was my first CMX event and I was definitely excited about all the intriguing ideas all of us came back with!
One theme that I felt kept coming up again and again throughout the talks was that of communities and identity. Reddit co-founder, Alexis Ohanian, during the key-note speech brought up an interesting note about identity and communities — that our profiles on a social network are not our identity, it is what we do in our communities (whether over social networks or community websites) that help us shape and define our online identities. Being a linguist by training, I’ve done quite a bit of research on identity and so looking at it from a community point-of-view was a great, and fun, exercise.
Communities don’t just support us in different walks of life, but are also tools of expressing identity and negotiating it.
We all have something called the “found identity”; part of our identities created by circumstances (ethnic background, religion, sex, profession, what school you went to, what you studied, and other external factors people use to categorize and describe you) and we’re continually shaping some aspects of our identity called the “made identity”; the identity we create for ourselves. Communities help us differentiate between our found and made identities. Take the example of Fuschia Dunlop. She’s an English writer, was born and raised in the UK, grew up eating British food — that is her “found identity”. But if you consider her achievements, her career path, you’ll quickly know that her “made identity” is this: a cook and a cookbook writer who specializes in Chinese Cuisine, and an avid traveler. She was the first westerner to train as a chef at the Sichuan Institute of Higher Cuisine in Chengdu, Sichuan, China and has a special place for the Sichuan peppercorns in her heart and her kitchen. Her association both with the cooking community in London and the cooking community in China have helped her carve out a niche where both of these identities of her have fused together!
Negotiating identities: an even more challenging endeavor when considering people living with chronic conditions
But negotiating one’s identity becomes even more important when you consider situations where one’s sense of self is negatively impacted or where one’s identity is strongly challenged due to unforeseen circumstances. For example: diagnosis of a chronic condition.
Being diagnosed and living with a chronic condition is a huge adjustment to an individual, especially when it comes to identity. This is especially true of chronic conditions that weaken, challenge, or negate valued images of one’s body’s and its ability. Health communities (online or otherwise) help us by providing an avenue for negotiating our sense of self and identity. A few examples will illustrate this.
Sometimes, people living with chronic conditions need some time to accept this as part of their life. They’re still negotiating with this new found characteristic as an addendum to their identity. In this case, they might try not to divulge too much information about their diagnosis and keep it to themselves and their close and trusted family and friends. But it’s when they accept this addition to their identity, does this acceptance reflect in their actions. They may, for example, start writing blogs about the condition to make sense of it and also help other people like them make sense of their altered identity.
Some then go a step further and become advocates for their condition, really embracing their diagnosis and fully manifesting it as a strong aspect of their identity. We must recognize that online communities, especially, the ones for people living with certain chronic conditions are key tools for them in their struggle to answer the question, “So who AM I NOW?”.
Online communities also help us identify with others like us and differentiate us from those who are not like us, and thus help us express our sense of self, an important aspect of our identities. This is true especially of people living with a chronic condition but who are also healthcare providers. There is a fine balance of figuring out ways and tactics to ensure their condition and symptoms don’t interfere with their care providing. This may lead to other people living with the condition to perceive that these care providers don’t struggle at all and are in fact pressuring them to do the same, to “appear infallible” perhaps! This constant push and pull of perceptions and identity can result in a need to re-negotiate identity. This reinforces the point that different aspects of one’s identity are constantly being altered and negotiated through interactions and sometimes may appear skewed to others. Imagine a doctor who also has RA. The doctor may at times struggle with two identities; one of a health care provider to others, possibly, those living with RA and one of a person living with RA. In an effort to do their job properly, they may unintentionally lead others to believe that they do not struggle with the condition at all, when that might not be the case at all!
What does this mean for me as a community manager?
All these humbling and powerful examples of identity-negotiations are not only inspiring but come with an important message. A message that we, as community managers, must do all that we can to provide people with safe and nurturing communities to express themselves to their maximum potential, and find camaraderie and support as they navigate their various walks of life. It is a way for them to be more of themselves, to actualize their selves they cherish so much.
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