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The Importance of Connecting With Others Who Live With Chronic Illness

Editor's Note

Join The Mighty’s Spoonie Life Hacks group to get tips for tackling everyday tasks from people living with chronic illnesses — or to share your own hacks!

Not knowing what is happening to your body. Not being able to do what used to come easy. Missing social events, missing work, seemingly disappearing. At the onset of my chronic illness, isolation became part of my life. I didn’t know why I felt awful all the time. It took all my effort just to get to class and do my work while in the second half of college. I went from sorority president to barely making it to chapter events. Slowly the things that allowed me to connect with others became unattainable.

I didn’t realize it at the time, but the isolation I felt made my experience a million times harder. I wasn’t alone — I still had my fiance (then boyfriend), my family, and a few close friends — but there was no one who truly understood what I was going through. And that felt terribly lonely, especially since I didn’t have a name for what was going on or any successful treatment options. I was scared and desperately seeking answers.

While in college, I tried to hide my illness the best I could. I told everyone I was fine, I pushed myself to attend events, and I still did well in school. I didn’t want people to look at me differently. I didn’t want people to feel bad for me. Looking back, I wish I would have shared my story earlier. Been honest with the people around me. Not put so much pressure on myself to be the same person I was before getting sick. But hindsight is 20:20 and I am so grateful for the growth I achieved over the last seven years throughout this journey.

Towards the end of college, a friend of mine whom I hadn’t spoken with in many years posted a link on Facebook to their blog. This person had written about their own experience with chronic illness and their path towards diagnosis. I read every word of the article with admiration for this person. Their bravery to share their story. Their willingness to connect with others. I had to reach out. I craved that connection!

While I knew people my age dealt with chronic illness, I hadn’t met any others yet. When I first visited the Mayo Clinic for evaluation, I was the youngest person there by at least 40 years. It made me feel alone, like I was the only young person this was happening to. I thought “why me?” This was part of my grief path. Over the course of time and through connections I learned I was far from alone in this fight. There are so many young people out there struggling with chronic illness.

After reading my friend’s blog post, I sent them a note thanking them for their honesty and bravery and hoping to connect with them as we both go on this chronic illness journey together. This was my first real connection. The first person who truly understood what I was going through. The first person I could talk openly with about the “not so glamorous” parts of chronic illness. I felt a weight lift off my shoulders. I felt friendship. I felt connection.

This person and a few others inspired me to start my own blog. I was so greatly impacted by my friend’s one blog post that I hoped by sharing my story I could provide connection to others out there who are sick and struggling. I started One Tough Cookie soon after college as a place to share updates on my journey, connect with others, and provide allergy-friendly baking recipes to the world.

This outlet opened me up to so many more connections. People began to reach out to me like I had reached out to my friend. I formed strong bonds with people I hadn’t spoken to in many years. It was freeing, it was joyful, and I felt a deep sense of community. Over time, I continued to write posts. I shared on various social media platforms. I joined Medium and The Mighty. I read posts from others who shared similar experiences to me. I had random chats with old friends and friends of friends who also had a chronic illness. I joined groups on Facebook. I became a member of the Digestive Health Foundation Ambassador Board. I learned to share my story openly and be proud of all I had been through.

My chronic illness is part of who I am. It’s not all of me, but it is a huge piece that affects my life. I’ve learned to let people in who understand that and let go of those who do not. I am confident in who I have become as a person and proud that I can stand up for the things I believe.

I also started Peony Health Coordination to connect with and help those navigating chronic illness. I never want anyone to feel alone in their experience. Whether a person needs a lot of organizational support or just an occasional pep talk, I want everyone to know they have an ally in me. Connection and support has helped me in my journey. I want to help others in the same way.

And I can’t end this post without recognizing the amazing support of the people around me who don’t have a chronic illness. My fiance, my family, my close friends — they all went along for the ride with me. They took the time to learn about my symptoms, diagnoses and treatments. They asked questions, they held my hand, they checked in on me. I truly could not have gotten through this experience without them. Our bonds grew closer through this time and I knew I could count on them for anything. They were and still are my rocks. The people I turn to first with the best of news and on my worst symptoms days. I cherish these relationships and thank you all for your amazing support, understanding, and unwavering love.

This story originally appeared on Peony Health Coordination.

Photo by Helena Lopes from Pexels
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