I kept my diagnosis a secret for a long time and suffered in silence. Speaking out on social media changed everything.
My name is Ali DiGiacomo, and this is the story of how social media changed my life.
I was diagnosed with juvenile rheumatoid arthritis (JRA) — now known as juvenile idiopathic arthritis — at the age of 15. I was a sophomore in high school and a very competitive swimmer. Before my diagnosis, I had competed in two Junior Olympics and was focused on my goal of becoming a collegiate swimmer.
Shortly after I was diagnosed, I had arthroscopic knee surgery. The surgeon stated that my joint was in a similar condition to a 60-year-old’s.
That year, my swimming career went downhill. My knee was causing problems, and I wasn’t as fast as I had been previously. I had to accept my fate. I would not be able to compete in collegiate swimming.
What shocks me to this day is that I didn’t tell anyone I was diagnosed with JRA. I kept it a secret. I mentioned that I had surgery on my knee and chalked it up as an injury.
I didn’t mention it for two reasons. Reason one: I didn’t know a single person with rheumatoid arthritis (RA), let alone anyone with an autoimmune disease. Reason two: I was in denial.
I suffered silently for nine years.
During that time, I had another knee surgery, 14 knee aspirations, 16 cortisone shots, 4 ER visits, a colonoscopy, and an endoscopy. I took tons of medications, including one called methotrexate, which can be used as a very low dose of chemotherapy and was particularly brutal for me.
There was nobody in my life that I could talk to that understood what I was going through. It didn’t help that some of my family members and friends shamed me for taking certain medications.
I had no hope, and I was struggling with depression. I was not always pleasant to be around. But being in pain 24/7 will do that to you.
I was 22 years old and felt incredibly alone.
It wasn’t until I was 25 years old that I decided to speak up. I had just received news from my rheumatologist that I had to go back on methotrexate after being in remission for 8 months. This was a breaking point for me.
I remember this moment like it was yesterday. I was sitting at my desk at work and staring at my pill bottle. I was dreading the idea of starting methotrexate again. I couldn’t keep my emotions bottled up any longer.
My co-worker asked if I was OK — I wasn’t. But I didn’t know how to explain to her how I was feeling.
I needed to talk to someone who understood what this felt like. I needed someone who understood what it was like to start methotrexate again.
It was at that moment that I grabbed my phone and asked my co-worker to take a picture of me. She was confused but got right up and took my phone. I stood up, held my pill bottle in my hand, and smiled for the photo.
That’s when I created my Instagram account @anotherdaywithra. It was one of the best decisions I’ve ever made. In a sense, it saved me.
I connected with someone right away. I used the hashtag #Methotrexate and came across someone around my age who also had RA. Chatting with her was exactly what I needed.
For nine years, I felt like I was a burden to my family and friends. Now, I had an outlet and a support system. I felt like I didn’t have to fight this battle alone anymore.
My life changed drastically. I started meeting more and more people living with chronic conditions who were my age. I went from not knowing a single person with an autoimmune disease to now knowing thousands.
My anger and sadness turned into joy and motivation.
I started making funny videos to raise awareness of RA. I noticed that making those videos helped me cope. Anytime I started feeling pain, I’d make a video about it. They were comical most of the time, but I also kept them authentic.
My inbox was flooding with messages. My followers were also reaching out about how alone they felt before they found my account.
When I first started the account, I met someone living with RA who was managing to exercise every day.
I was envious of her.
At first, I wondered, “How on earth can she move like that?” But my next thought was, “Well, if she can do it, so can I!”
I reached out to her, and we developed an amazing friendship. She became my accountability partner and encouraged me to get moving each day. After just a couple of months, I noticed a difference in my joint stiffness. I woke up each morning feeling better than usual. I felt stronger and had less joint pain.
I started posting about my fitness journey, and people kept asking me if I could teach them. That’s when I decided to become a certified personal trainer. By this point, I had been working out for over two years. I wanted to prove to other people living with RA and other chronic conditions that they could get their bodies moving in a fun and safe way.
Working out didn’t have to be high intensity training. It could just be sitting in your chair and holding light weights. Or it could be dancing to your favorite album.
After getting certified as a personal trainer, I started teaching group classes right away. I felt so much joy teaching fitness. This motivated me to quit my casting job in film and pursue a full-time career in fitness instead.
My mind is still blown that this new career path all started with me seeing someone on social media.
It’s always important to remember that social media is just a snapshot of someone’s life.
I constantly remind people that if they come to my account and see me bouncing up and down, dancing, exercising, and running around, they should take it with a pinch of salt. It took a lot of work, medications, procedures, and more to get to where I am now.
I don’t want others to constantly compare themselves to another person living with a chronic condition. No two people with chronic conditions are the same. We all react to medications differently. Our diseases attack our bodies differently.
I’m incredibly grateful for the people I’ve met through social media. I now have a second family. Someone is always there for me when I need them.
If you or someone you know has a chronic illness, please check in with them or check in with yourself. Please don’t ever feel that you’re alone.
Reach out to me or any one of my friends on social media. My best piece of advice for someone living with a chronic illness is to connect with someone who understands what you’re going through. I promise it will help.
Fact checked on November 20, 2022
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