Being diagnosed with a chronic illness at sixteen came with mixed emotions. First, I was relieved to finally have an answer to what illness had taken over my body and life a year ago. But on the other hand, this was an illness not I, nor anyone else I knew, had heard of at the time. I was a perfectly healthy looking sixteen-year-old girl trapped in a body plagued with nausea, vision trouble, migraines, intense brain fog, high and low blood pressure, insomnia, hypersomnia, chronic pain, digestive issues, worsened periods, circulation issues, chest pain, tachycardia- the list goes on. I went from an A-student, competitive athlete, and sociable teenager to a girl who could barely ever leave her darkened bedroom and bed. Aside from the physiological war that was going on within my body, I had lost everything that made me, me. I was depressed and alone with no one to understand what I was going through, and most people not believing I could be as sick as I was with my appearance still that of a normal, healthy 16-year-old. This is how I discovered what online communities can offer.
During some point in the beginning of my journey with POTS, I found a private Facebook group dedicated to bringing people together from all around the world, all with the same diagnosis as me. This became a place I could go to and be surrounded by people who just got it. Although POTS symptoms and severity can vary widely from case to case, these people were fighting the same physical and mental fight that I was. Now a decade after I first became sick, I can honestly say I would be much further behind in my health journey if it wasn’t for this online community that I found years ago.
Within this group of over 50k members, there is a community. McMillan and Chavis (1986) named four elements that contribute to the sense of community: membership, influence, integration and fulfillment of needs, and shared emotional connection (Gruman et al., 2017). To join this private group, there is a short questionnaire that must be filled before being accepted. This ensures the group is compromised primarily of people already with a POTS diagnosis. This creates the sense of belonging and provides a safe place for its members. With a group of this size, you can choose your level of participation. There are some who are very consistent participates, and others who observe from more of a distance. At different stages of my journey, I have been more active or less active, depending on my needs at the time. Regardless, I know if I need help, there will always be people there for guidance. Feeling as more of a veteran of the group now, it is nice to give back more and help those newer to this diagnosis. The reason I am most thankful for this community, however, is due to the sharing of personal experience, advice, and resources. I have learned far more about my illness from reading through this group, than I have ever sitting in front of a doctor. New research is posted and discussed. For example, one new study posted in this group led to a huge breakthrough in my treatment and symptoms, which has allowed me to come back to finish my undergraduate degree. I have also found my cardiologist and neurologist through recommendations in this group, as there are very few specialists out there. Lastly, this group is a community due to our shared experience with chronic illness. While loved ones may try their best to understand, no one truly can understand without experiencing it themselves. There is an emotional bond we share due to this shared experience. We support those struggling with their circumstances, whether it be because they are new to this diagnosis, or because they are plain sick and tired of being sick and tired.
While we come from all around the world, and the large majority will never know each other in real life, there is a community that comes in the form of online support groups. Having this group throughout my health journey has given me the community I needed to not be alone, and it continues to give me the tools I need to properly navigate my diagnosis. There are many unique circumstances we may find ourselves in from time to time, where the people immediately around us will not be able to help or relate. Thankfully, there are now a plethora of online options that eradicate distance from the equation and connect us with people going through a similar situation so that we can navigate our lives to the best of our abilities.
Reference:
Gruman, J.A. Schneider, F.W. & Coutts, L.A. (2017). Applied Social Psychology: Understanding and Addressing Social and Practical Problems. Thousand Oaks, CA: Sage