May 31, 2022
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Tatiana Timofeeva/Stocksy United
Finding people who understand your experience living with a chronic condition can feel comforting and empowering.
When I was first diagnosed with Ankylosing Spondylitis (AS) at 22 years old, I felt extremely alone. As a young person with arthritis, I felt lost and didn’t know what to do.
I turned to Google for information about AS, but I only found medical information. I couldn’t find any patient-led platforms. Sure, I had a diagnosis, but I still felt incredibly alone in my journey.
That’s when I decided to turn to Instagram, and my life changed forever.
With the help of my mom, I followed a few people on Instagram who spoke openly about their experience with AS. My mom encouraged me to message them, but I felt too afraid. I wanted to watch as a follower, comforted that I finally found people who could relate.
For 6 months, I followed a few accounts related to AS and otherwise carried on with my day-to-day life.
In November 2018, I decided to start a blog. I wanted to share my experience living with a chronic condition and connect with newly diagnosed people who felt just as lost as I did.
My goal was to help just one person. If I could help one person feel less alone in their new journey, my goal would be accomplished.
I became more and more comfortable sharing my story online, and my blog audience grew. I received feedback here and there, but I decided to do more.
In early 2019, I started posting more of my new-ish life on Instagram. I wanted to share my story with a wider audience, so I transformed my artsy photography account into a chronic condition-focused account.
At the time, I was still on Remicade as a monthly IV infusion. I shared a photo each time I went to the hospital to show that young people are sick and undergo treatments, too.
I received messages each week from people telling me how thankful they felt for finding my profile. Most were people undergoing the diagnosis process and others who had been diagnosed for years. Like me, they started to feel less alone now that they could relate to someone.
2020 was a big year for my advocacy journey. I switched biologic medications, and my chronic fatigue symptoms worsened. I wanted to share the entire process, and my goal was always to be open and honest about everything that I was going through.
I think honesty can help others by being raw and not only showing the good times. I’ve experienced some bad times with this disease, and I wanted to share the harder moments, too.
My profile started reaching more people, some who live with chronic conditions other than AS. More messages flooded my inbox, and I began to develop friendships all over the world.
I finally felt less alone and like my life had purpose again — something I lost when I got sick in 2017. It meant the world to me to hear that I helped others feel comfortable sharing their experiences with their loved ones, too.
When I was newly diagnosed years ago, all I wanted to hear was that I’m not alone. It’s what everyone with a chronic condition wants to hear.
The community has helped my mental health so much. I’ve made friends and connections from all over the world. I live in Canada, and I have friends everywhere. I know that, if I’m having a particularly bad day, I can reach out to my friends, and they are there with open arms.
I appreciate how supportive the online chronic condition community is. We share each other’s posts, comment words of encouragement, and lift each other up every day. If I’m having a particularly bad day, my inbox and my comments remind me that I’m not alone, that I’m valid, and that people support me.
People living with chronic conditions other than AS can also be very supportive. Many chronic condition experiences are similar. We experience medical trauma, medical gaslighting, fatigue, and pain. We relatively understand one another and can put ourselves in one another’s shoes.
I cannot say enough good things about the online chronic condition community. I am so grateful that I found a community of people who can relate to my experience.
I am a different human from that lonely, newly diagnosed 22-year-old to my now confident 26-year-old self. It means the world to me have a community of friends who support me when I’m down.
Sharing my story opened up a world I never knew existed, and I’ll be forever thankful.