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What I Learned When I Moved Away From My Support System

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One thing that most people with chronic or rare diseases can agree on is that a new side effect or symptom can never be dismissed as “just a headache” or “coming down with a cold.” Often, the emergence of a new symptom causes a new battery of tests and doctor’s appointments. It could also mean new medications, therapies, or changes in your lifestyle. It is difficult to go through this, and everyone knows that one of the most crucial parts of living with a rare or chronic illness is having a fantastic support system.

For me, my amazing support system is comprised of my family (my mom and dad are real MVPs) and some of my closest friends from childhood. My parents make sure that I am fighting for my health at every appointment and my friends distract me from chronic pain. They were all there for me after my brain surgery and continued to be there for me throughout my recovery. We were teenagers, but I’d argue that we had all been through so much that we were more mature than most adults.

Then, we went off to college. We are all spread out across the country, now. Some ended up on the West Coast, others stayed on the East Coast, and a few of us migrated to the middle of the country. I found myself in Columbus, Ohio attending The Ohio State University and studying engineering (a dream come true). I met people who I consider some of my closest and best friends only a few months after meeting them. However, they only know me as someone who struggled with the effects of a rare disease in the past and who appears to be fine now. And, to me, that is a beautiful thing because they never saw me at the height of my illness. They are friends with the person I most enjoy being.

But then I got a headache. It has lasted for a few weeks now and is eerily similar to the one that sent me to the emergency room to be diagnosed with pseudotumor cerebri. The major difference now is that I am in Ohio: away from my family, my support system, my neurosurgeons, and doctors who understand me and my disease. I am in uncharted territory.

Uncharted territory is terrifying, especially when you are all alone. But I have found that it is important to ground yourself in what you do know. I call my parents frequently and am in constant communication with my doctors at home. They made sure to make appointments for as soon as I am home even though they’ve ruled out everything they can think of after looking at MRIs of my brain. My friends who are now scattered across the country talk as much as possible, and I find myself opening up to my close friends at school more. All of these people keep me strong and encourage me to keep hiking through this uncharted territory.

Since moving away, I have realized that a support system is always growing. It is important to open up to people about what you are going through, and true friends will love you no matter what you are going through. But it is also important to keep those who live far away close to your heart because distance doesn’t change how much you all care about each other.

So, even though I still do not understand this mysterious new headache, I know that I am going to be OK in the end because I have a support team that is even more impressive than Ohio State’s football team when we beat Michigan this year. And for that, I’m extremely grateful.

Originally published: December 11, 2018
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