Learning how to give myself grace during my PNH battle

Changing my thinking patterns is but one of the skills I now employ for wellness

Brandi Lewis avatar

by Brandi Lewis |

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As fatigue took hold of my body, I’d lie in bed and think how lazy I was for not getting up to start the day. Early in my health battle, I had trouble being OK about not being OK. I thought that to become well faster, I had to get up and do something every day.

That health battle, with me against diagnoses of aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), left me with symptoms of fatigue, bruising, nose bleeds, brain fog, and many more problems. The brain fog, for example, made it harder for me to remember short-term and long-term tasks.

One afternoon after I woke from a two-hour nap, I still felt groggy and tired. That’s when self-doubt and accusations of laziness entered my mind. “Come on, Brandi, there’s so much more you can do,” I thought. “Get up and get going.” After this mindset came up repeatedly, I knew something had to change. I had to give myself grace for how I felt and just be.

I slowly learned how to do it. I restructured the thoughts in my mind, stopped being so hard on myself when the days were long, and listened to what my body needed. This simple but important lesson changed my outlook.

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Restructuring my thoughts

When I felt myself slowly drifting into thinking “I’m not enough,” I quickly changed my thoughts. I understood how powerful my mind was and how what I thought could quickly become my reality.

If I thought I was lazy, I’d become lazy. If I wasn’t kind to myself in my mind, I’d react the same way outwardly. I didn’t want those negative thoughts to affect my actions.

Another great tool I used was writing down affirmations about myself and hanging them on my bathroom mirror. I’d say them aloud while looking at myself. It helped me restructure my thoughts and stay on top of my mental health.

Being easier on myself

I’ve always been too hard on myself. In my life before being sick, I was always on the go and accomplishing the next task, all to get me closer to where I wanted to be. In my ambitions, I always took the next opportunity to get one step closer to success. This approach caused more stress on my body than I’d thought.

My illnesses have taught me to relax and be less hard on myself. Understanding that I didn’t have to go after the next accomplishment helped me take better care of my health. I had less stress and more opportunity to live in the moment.

Listening to my body

Lastly, I improved by listening to my body and extending myself grace when it needed to rest. I’ve learned that our bodies talk to us through the signs they offer, such as our energy, recovery, and pain in certain areas. We must learn how to listen to our bodies when they speak by giving them what they need.

In my own case, the signs might be a certain color my eyes become or the sensitivity at the bottom of my feet. Perhaps most vitally, I also learned to give myself grace when I didn’t have the energy to do something.

This gift helped me learn other important lessons about my body and my mind. When my life gets busy, I’ve learned to slow down. I don’t have to do something all the time to be successful. I began to see my successes as something I found through grace.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.