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There is something about living with a chronic illness that makes me feel less safe, less bold, less inclined to say “yes” to invitations, gatherings, parties and other fun. I don’t like this feeling but it’s part of who I am now and I have to accept it.

But just because I have to accept it, doesn’t mean I have to like it or think it’s okay. It doesn’t mean I have to give in to it. It doesn’t mean that my life should become stagnant. I do not have to accept that. The feeling of less safety, is just that, a feeling. It doesn’t mean it’s actually true. The only thing it means is that I must be vigilant to guard against the inclination to back away from living.

This idea of backing away from life is dangerous for the chronically ill. Using my illness as an excuse to retreat from life is the equivalent of waving a white flag in battle. It’s surrender. And I will not surrender.

It would be foolish of me not to acknowledge that things in my life have certainly changed since being diagnosed with Sarcoidosis. My physical strength has dwindled. My mind is not as sharp. I do long for more energy. I hope for less pain. But despite the changes, I would never forgive myself if I gave up on chasing a normal life. Or as much of one as I am still able to create.


I may not be able to do all the things I used to do but I can learn new things and I can modify old ones. I don’t simply, in every case, have to just give up and I don’t want to. Because while I am less inclined to be bold, I don’t want to stop trying to be bold. I want as much normal or the new equivalent of normal that I can get in my life.

So I will continue to chase a feeling of normalcy and I will be brave in face of fear and I will push to continue living because I want to be present in my own life and I want to be there for those who I love despite pain, despite brain fog and regardless of fatigue.