a man emerging out from dark clouds to a bright light

Learning to Live Again with My Illness

A while back I started becoming overwhelmed with my health. It felt like I was being controlled by it day in, day out and left me feeling like I had no sort of life for myself. I was consumed by it all—physically, mentally, emotionally. I couldn’t remember the last time I felt like a human being.

I temporarily removed myself from the community

The spoonie community has helped me more than I could ever express to anyone. They’ve gotten me through my worst days, have selflessly taken time out of their day to give me advice, and have even helped me put a name to symptoms I was struggling with. But at the end of the day, too much of anything is, well, too much. I was already feeling consumed by my own health and spending so much time in the community (which was every single day) was making me feel like all there was to my life is being ill. I needed to step back, spend my time elsewhere for a while and get in touch with other parts of myself again.

I finally let myself feel like what I was doing was enough

Although I had been taking a break from the online community, I never stopped advocating and educating outwardly in my present life. I learned that as important as it is to be advocating online, you don’t have to carry the weight of feeling like you have some sort of responsibility to do so every day in every way possible. It’s already hard enough to live with a chronic illness. With minimal energy from chronic fatigue, I think it became unhealthy for me to put so much expectation and responsibility on myself in the community. I stopped posting so much on Instagram, but in turn I instead continued to do so in my real life. I realized I didn’t have to do it all—my effort was enough.

I found balance between being active in the community and doing my own thing

During my break I started spending more of my time doing hobbies that I enjoy. The weight of my health that I felt so heavily previously drastically lessened. Yes, I was still having bad days...and on those days it was impossible to ignore. I still broke down and my heart felt dim. But the periods between those breakdowns were spread much further apart. I finally got to a place where I was living life with my illness. Rather than allowing it to consume every aspect of my life, I learned to work with it. I had a newfound balance with acknowledging it when it needed to be and letting it go when necessary. It no longer holds so much power over my life.

It's the first time in years I’ve felt like I have a life again. That this life is mine and not being controlled by my illness. I am still fighting every single day, but for the most part—I am happy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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