It’s a constant, complicated uphill battle. It’s cycles of frustration and resilience: I cry, I get angry, I feel terrified at the thought that nothing may ever change. I feel like I’m drowning in a system that’s unequipped to fix me. A system in which everything costs hundreds of thousands of dollars and it’s you versus the insurance company and you’re always trying to convince someone that you’re actually sick.
But then I channel that frustration into fight and I throw another punch. I keep pushing, I talk down the fear driven thoughts, advocate for myself, brainstorm with my doctors, get new opinions, feel glimpses of hope, distract myself, feel positive and strong.
I’m in a cycle of seemingly random infections, rounds and rounds of ineffective antibiotics, worsening gut issues, worsening autoimmunity and more diagnoses. I am years deep into a confusing journey with no proven effective solutions so far. How can I function when something as foundational as my health isn’t reliable and the only constant my physical body knows is pain and discomfort? What am I supposed to do when all the things that are guaranteed to work, don’t? What do you do when the technology you need exists five to ten years from now and not today?
It’s practice and patience and gratitude. It’s soaking in the good when the moment is good. It’s pain in different capacity every single day. It’s periods of silence and lack of blogging and periods of transparency and sharing. It’s feeling like no one understands and then downplaying the struggle to avoid pity and victimization. It’s being a full time student, having a job and a social life while balancing rest, weekly appointments and therapy. It’s understanding that everyone is going through something and despite my health seemingly being a unique situation, I am not that special. Everyone’s struggles look a little different but nonetheless everyone does struggle. It’s realizing that it takes a village and asking for help is okay. It’s knowing I am really really lucky for my privilege and my people.