five seconds of honesty

I’ve recently noticed that when I write blog posts, I tend to downplay the negative aspects of living with a chronic illness. My entire life, I have seen my birth defect as a positive and I will always believe that – without the experiences I have had as a result of my illness, I would be on a completely different path in life. However, in the last year I’ve realized the importance of taking time to recognize the negative side effects of being chronically ill. This is something that I have a very hard time doing. Over the last few months while I have been trying to write about what I went through this last year, I have found myself completely overwhelmed with emotions that I never even knew I felt in the first place. On some days, that emotion can be all-consuming. I think that in the moment my adrenaline was so high, and I was so determined to persevere, that I didn’t let myself fully recognize how my health was affecting me, both physically and emotionally. Now I’m taking time to reflect on every moment and it almost feels like I’m grieving. What surprises me most is that the memories bring about such intense emotions, as if it just happened yesterday. I remember the fear of being septic and barely being able to explain my birth defect to the ER doctors, and the defeat of being hospitalized every three weeks due to resistant kidney infections, to be told I needed a stent replacement and another PICC line for IV infusions. I remember the disappointment I felt when I had to miss my senior year NDA camp with the Dukettes, the football games I didn’t get to dance at, and the practices when I forced myself to dance even though the pain was excruciating because it was the only time I truly felt like I was in control, and oddly enough in those moments it was as if I was pain-free. There are so many little things that at the time seemed irrelevant but actually affected me more than I can say. And while I sometimes felt so alone, other times I had never felt more supported because of my family, friends, and mentors who helped me every step along the way.

I have felt emotions from every end of the spectrum and I have to be honest that I’m having a hard time expressing that. Had I let myself feel these emotions in the moment, would it be so hard now? I’m not sure. The one thing I do know is that I don’t regret any of the decisions I made, and I’d do it all again if I had to. I know that over time it will get easier, but I need to let myself heal and my first step in doing that is being honest with myself and those of you following my story. One of the reasons why I’ve had such a hard time sharing this with you all is that I feel like every blog post has to have an overarching positive lesson and this post focuses so much on negatives. What I have learned and what I hope to encourage you all to realize, whether you have a chronic illness yourself or you have a loved one who battles illness, is that sometimes life is tough, and you might feel defeated, but that is completely normal! It’s okay to admit to not being okay, and in acknowledging that you will find the strength to carry on.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’”

— Eleanor Roosevelt