My Life with Rare Chronic Illnesses

Hello, my name is Megan. I have been diagnosed with postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), small fiber neuropathy (SFN), eosinophilic esophagitis (EOE), and hypotonia. My life is crazy between hospitalizations, doctor appointments, school, music lessons, family, and friends.

My whole life has always been dictated around my health issues. My parents having to balance letting me be a kid and “Is this really safe for her?” I have had to adapt to change. Change can be in small things and big. It could be friends, doctors, or states. There are many different types of changes. I’ve learned all of them.

After that I learned I have to surround myself with people who are going to love me and want to help me. That is one on the biggest things in my life right now: finding people who love the fun side of me, but also the sick side of me. In our family we try to make everything as “normal” as possible. I think it’s funny because nothing in this world is “normal.”

Society has changed our brains thinking everything is wrong and we shouldn’t be like “them.” We need to accept ourselves and realizes being different is OKAY! I struggled with my mental health because I’m sick. I’ve had to change my mindset on what is okay. You can’t let other people dictate what you do. I’m still learning and changing, but this is MY journey, not yours. Thanks for reading.

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