Learning to Live Again with My Illness

A while back I started becoming overwhelmed with my health. It controlled me day in day out. I felt like I had no life for myself. My health was consuming me physically, mentally, and 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. They've selflessly taken time to give me advice and 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 already felt consumed by my own health. 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, so I decided to spend my time elsewhere for a while to get in touch with other parts of myself again.

My advocacy efforts are enough

Although I had been taking a break from the online community, I never stopped advocating and educating in my daily life. Online advocacy is important, but I learned that it's not my responsibility to do so every day in every way possible.

Living with a chronic illness is already hard. Since chronic fatigue leaves me with minimal energy, it became unhealthy for me to put so many expectations on myself. I stopped posting as much on Instagram but continued to advocate in my real life.

I realized I didn’t have to do it all. My effort was enough.

Finding balance and reclaiming joy

During my break I started spending more of my time doing hobbies that I enjoy. The heavy weight of my health began to lift.

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 found a new balance. I acknowledge my health when I must, but I let it go when I can. My chronic illness no longer holds so much power over my life.

For the first time in years, I feel like I have a life again. This life is mine, and I will not be controlled by my illness. I am still fighting every single day, but for the most part, I am happy.