Ankylosing Spondylitis Uncategorized

Facebook, Instagram, and Twitter, oh my!

How social media has helped me find comfort and positivity

I don’t actually even have a twitter account…but the play on words was too perfect πŸ˜›

I often hear people talk about the evils of social media: an invasion of privacy, feeling the need to compare yourself to others, time wasted endlessly scrolling through feeds…the list goes on.

When I was diagnosed with Ankylosing Spondylitis, no one in my “real” life knew what it was, or really understood what I was facing. I was scared and upset, and I started Googling (which is almost always a bad idea). At first I found the dark side of chronic illness. I found people who were very angry and pessimistic, and who only posted the pain and sadness that they faced. I was already struggling with my new diagnosis, but now I was also worried about developing heart problems, losing my job, becoming completely wheelchair bound, AWFUL medication side effects, my loved ones leaving me, and my head exploding into a million pieces (not literally the last one- but I was pretty worked up).

Eventually, I started to find people who I could relate to. People who shared the positive and negative aspects of their journeys. People who wanted to offer advice, guidance, and support to each other. I went from constantly feeling dark and dreadful to recognizing that, while my life had changed, it wouldn’t all be bad. I would still have good times and happiness, and I had a new family to share all of it with.

I recognize that real struggles are an honest part of chronic illness, but I also feel like we need to share the positive moments too. I don’t think it helps anyone to only focus on the negatives; we all have ups and downs, sometimes more of one than the other, but sharing the complete journey is what brings us together and creates a beautiful support network of chronic illness warriors. I had found my community of people like this through social media.

I wanted to be like those who had helped me. If I could give one positive message, or help make one person’s new diagnosis a little less scary, I wanted to do it. I created an Instagram account to share my story, and words of support and encouragement. Initially I didn’t include my name or any personal details about myself. The internet was a beautiful place, but I wasn’t so naive to think that there wasn’t still negativity and judgement. At that point I was just a little too afraid to totally put myself out there.

Over time I gained confidence and acceptance in my diagnosis, and realized the importance of sharing my story. Being diagnosed with AS I felt alone and isolated because no one that I knew had any idea what I was dealing with. In reality, it isn’t a rare disease; but if every person who has it feels that same fear to share their story that I did, it will never become any more commonly known.

My story is worth sharing, and I want to be open and honest about my life, my challenges, and my triumphs while battling AS.

I introduced my real self to social media, and have continued to share my story. I am building real connections with people who are facing the same struggles as I am, and I feel incredible when someone tells me that I gave them hope, or helped them navigate their diagnosis in any way.

My first non-anonymous Instagram post

SO THANK YOU to the people who have helped me navigate this disease, and who have offered support and words of encouragement.

THANK YOU to those of you who also share your honest stories, (the ups and the downs) so others can learn from you and relate to you.

Finally, thank you to Facebook, Instagram, and the people who open themselves up on them, for being my community and comfort in one of my greatest times of need.

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