Using Instagram & Social Media to Find Community

Social media plays so many roles in people's lives. It can be a way to connect with others, it can be a way to find information, and sometimes we may even use it too much! In the chronic illness community, we see social media as an effective tool to help those living with health conditions find others who understand them.

Especially during the COVID-19 pandemic, social media continues to be a way that we find friendship and stay updated on people's lives. We have seen the ankylosing spondylitis (AS) community grow on social media, especially among young women. We decided to ask some of our young female advocates how social media has impacted them. Read on below to find out more from our advocates Steff, Cassia, and Sarah L.

1. How have Instagram and other forms of social media supported your experience as a young woman with a chronic illness?

Steff: "Instagram and other social media platforms have supported my experience by creating a sense of community and family. The number of friends and acquaintances I've made on social media since being diagnosed with AS is more than I can count. I've made friends I would consider to be family at this point, and people I can count on to help me and support me whenever I need it."

Cassia: "When I was diagnosed with AS, I went searching online for other young people with this illness to see what their lives were like and ask them questions about it. Since then, I have discovered others around the world through Instagram and formed virtual friendships with many of them. It's pretty cool to see people posting about flare-ups or injections – in a way, it normalizes an experience that otherwise makes me feel like the odd one out. And when I can actually see others with AS living full, happy lives and even raising families, it gives me hope for my future. Without Instagram, I wouldn't know any other people who 'get' what I'm going through. But now, I have a group chat with other young women with AS where I can talk about anything and know they truly understand."

Sarah L: "Building connections through social media, specifically Instagram, has essentially altered my mindset in an incredibly positive way living with a chronic illness. I've had AS since I was 9 years old, and up until 6 months ago, I didn't have many people I could confide in or could understand the complexity and hardships that come with living with an autoimmune disease. Now I have people – a whole community – behind me that help support me when I am struggling."

2. Has using Insta/social media led to better information than if you were to search on Google?

Steff: "Instagram has definitely led me to better information than Google. When I first was diagnosed and used Google to find out information, it would just lead me to the typical symptoms and signs of AS, not what everyone actually goes through. Through people's posts and having conversations about uncommon signs and symptoms I experience, I found out way more information. I also prefer hearing personal stories to medical information. I like to know what people have lived with."

Cassia: "Yes. For some reason, Googling often leads to major websites that have outdated, incomplete information about this condition. Social media tells more current, personal stories, with a wider range of symptoms and experiences. I would much rather hear about life with AS from someone who actually lives with it as opposed to a webpage. Social media also comes with the ability to privately message other people with questions, so it feels more personal."

Sarah L: It's definitely helped in the sense that I am able to find more diverse and individualized information. It's helped me realize that for one, nearly anything is possible in the world of chronic illness in terms of symptoms. Secondly, that whatever I am experiencing has most likely been experienced by someone else, which helps me figure out what direction to head toward when I find myself lost or feeling trapped."

3. How have you learned about spondyloarthritis through social media? Is the information more helpful than what you get from your doctor?

Steff: "I have learned almost everything I know about spondyloarthritis over social media and my life experience. When I was diagnosed, my rheumatologist kind of just told me I had AS and sent me on my way. That's when I turned to both Google and Instagram, found out the basics from Google, and everything else like day-to-day symptoms and living through Instagram."

Cassia: "Social media has exposed me to a wider array of people with this condition – people with different symptoms, treatment plans, and lifestyles than me. Because of this, I’ve learned how much AS can vary. Doctors don't often have the condition they're treating, so their tips for pain management feel shallow. I like to hear what people who actually have AS are doing to cope. I also find that social media allows people to talk freely about the mental health side of AS, whereas my doctor has never talked to me about that."

Sarah L: "Social media has truly helped me learn more about spondyloarthritis. It has also helped me become more confident in asking specific questions or requesting referrals with my doctor. I didn't realize how much information I had been deprived of or how much information I lacked that may have helped me out in certain situations years earlier."

4. What motivated your decision to share your journey via social media? What impact has this had on you?

Steff: "My main motivation to share my journey on Instagram was to provide the patient side of things. As I said, I found the bare minimum of information about AS from Google. I wanted other newly diagnosed patients to be able to easily find the patient side of the disease rather than just find what Google had to say, which is the medical side of things. In sharing my journey on social media, my life has become so much lighter. I've found friends who instantly just get it. I have friends I can vent to at any hour of the day because they're more than likely suffering from painsomnia at 3 am just like me. I feel like I have more of a purpose from sharing my story online rather than if I had just kept it to myself for the past 4 years."

Cassia: "Social media is a curated reflection of ourselves, so when my AS became a part of who I am, it felt important to include it in my online presence. I wanted people in my life to know that although my Instagram feed shows a young, healthy-looking woman, I am chronically ill. It has impacted me by informing people in my life about my illness who otherwise would have no idea. Posting about AS feels scary but also freeing. The more we post about things like this, the less stigma there will be."

Sarah L: "I started sharing my experiences only about 6 months ago because of the isolation I had been feeling from a prolonged and dreadful bacterial overgrowth where its symptoms had been seemingly taking over my life. This pushed me out of a remission of 8 years, and I felt like I had to learn how to cope with a chronic illness. After everything I had gone through as a kid, on top of what I was experiencing now, I felt like I could accomplish 2 things: helping someone out there who may be in the same situation or are experiencing things that I had gone through these last 16 years, and finally using my passion with writing for good. Despite the trauma chronic illness can create or the debilitating symptoms that weigh down on me, being in this community has made me feel like the first time in 16 years, I have finally been able to come to terms with my illness and be confident in myself as a whole."