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On the Days You Feel Like Your Chronic Illness Has Won

Recently, I had to miss my dream vacation that I had been planning meticulously for months. I was so excited, getting everything in order at work and school, just looking forward to the adventure ahead. However, when it came time to actually go on the trip, I ended up sick and in the hospital. I had to make the excruciating choice to go, inevitably make myself worse, and end up in an Icelandic hospital — or postpone my trip. Just a few years ago, I would have chosen the former and pushed myself to destruction. I am proud of the decision I made not to go; it shows how much I have matured and how much more respect I hold for my health now more than ever. Even though I know it was the right decision, it does not make it any easier.

I have missed out on my fair share of things living with a rare disease, very long chain acyl-CoA dehydrogenase deficiency (VLCADD). Over the years, I have gotten better at overcoming the disappointment, thinking of all the amazing things I have been blessed to do in life, and whispering to myself “next time.”

However, missing out on these crucial moments, like a hand-crafted, once-in-a-lifetime adventure, can be soul-crushing. It hurts so much deep down in a place that is hard to pinpoint nonetheless describe.

I try to do everything right, every second of every day. I try to control every factor. I take my medicine, stick to my diet, drink and eat enough, exercise, and get enough sleep. I subject myself to uncomfortable, inconvenient situations in the short-term so I can hopefully, in the longer-term, triumph. I do it for that one moment of freedom, standing on a mountaintop somewhere overlooking an amazing view and breathing the fresh air, reaffirming that all the effort was worth it. But sometimes, when that just doesn’t happen, it makes me wonder “Why even bother?”

The weeks following my missed trip, I lounged around. It was all I could do because I was so ill, but part of me was hiding and grieving everything I was missing out on. Deep down, I was so happy for my friends who got to go, but I was temporarily slighted with both guilt and anger. Guilt that I had to miss out on the trip and precious time with them, and anger — envious they are healthy and got to go when I could not. I despise when those feelings overcome me. It makes me feel that I am prioritizing my own self-pity over my relationships, but sometimes it is inevitable. I have found the best approach is to just let the feelings come, talk about them as I can and then in due time, move past them. It is a constant struggle to swat away that annoying, overpowering voice in my head yelling, “There will be no next time! You are sick! You will never be able to do anything!”

We all have those days where we feel like our chronic illness has won. I think one of the hardest parts is knowing it is not the last time; there will always be a next time. There will likely be another missed trip, but I don’t know when it will be or how to stop it. The anxiety is what eats away at me. Sometimes I am literally stopped in my tracks thinking about how it is possible I will miss, or have to suffer through my graduation, or even my own wedding because I am sick.

But the way I always try to frame it, sometimes more successfully than others, is that there will always be a next time when it doesn’t happen. A morning when I wake up, bags packed and ready to go, and I get on that plane, off to the next adventure. Less than six months later, I went on an impromptu trip with a girlfriend to two different cities and had the trip of a lifetime. We ate, walked, talked, and drove our way through two cities we had never experienced.

I am not going to tell you not to feel defeated.

We are not super humans with emotions of steel (I can ensure you from someone who has tried, it is not a good idea).

Feel defeated.

Feel broken.

Curse your illness and the world for a minute or two, but then breathe and start planning your comeback.

Because everyone loves a comeback story.