The story of Sara
I am Rare: Eosinophilic Esophagitis
(because having a rare disease isn’t enough, they had to make it impossible to pronounce too)
Rare
Did you know a synonym for rare is “extraordinary.” Yeah, we’re rare, we’re out of the ordinary, we’re far and few between but we are also extraordinary. That’s the word that came out of my gastroenterologists mouth when she originally diagnosed me with EoE. She thought my gastroscopy was extraordinary, she was fascinated by me. It’s taken me 15 years to see the beauty in that moment, and to see beyond my diagnosis.
What does having a rare disease mean?
It means explaining your disease a thousand times, to the same people who still do not understand it or know how to pronounce it. It means people labelling your disease as something more general, that is easier for them to understand. It means constantly hearing “Oh, so you have choking problem”, or it’s “your throat thing.” I have a complex and rare autoimmune disease, I do not have a “throat thing” whatever that even means? It means people constantly asking you “have you tried this?”(fill in the blank here… essential oils, cutting out meat and dairy, being more positive) or “I looked it up and it says it’s caused by (another fun fill in the blank game).” Let me be clear here, I have had this disease for over 15 years, and yes I also have access to google. If a combination of google and my specialists who know me and understand my complex disease thought it would be a good idea for me to try things, I would have tried them. I do not need advice, or pity, I would like to be understood, or even just heard.
Being rare in the medical world
It means going to doctor appointments, specialist appointments, & hospital visits and having to literally spell out your disease to any and all staff who have no idea how to pronounce it, let alone understand what it is and what the symptoms or treatments may be. I am well aware not all medical staff will know every single rare disease out there, and I don’t expect them to, but as someone with a rare disease, it is absolutely exhausting having professionals tell you wrong information about the disease you have had for decades. Having a rare disease also means you lack the comfort of doctors having a general understanding of what is happening in your body when help is needed urgently or you are experiencing a traumatic situation.
Human Connection
To this day, I still have never met anyone in person who also has Eosinophilic Esophagitis, or any eosinophilic disease for that matter. I have never had a real human connection with another human being who understands what I’m going through, mentally and physically. For me, this is the most difficult part of being rare. It’s been the source of isolation, and anxiety. It’s hard dealing with something heavy when no one around you understands or can relate. Yes, I have supportive people that offer sympathy but sometimes you need more.
Thank God for the Internet
Thanks to the internet, facebook, and other social networking groups, I have had conversations with hundreds of people online who either have my disease or have a child with my disease. I am so thankful that Rare Disease Day exists, I am equally thankful for the EoE support groups I have become a part of. Sometimes I have awful days, days I have had to make myself vomit in my car while driving, in the middle of a family dinner, or in the middle of my classroom full of children. I can’t tell you how amazing it is to talk to other people who actually understand what my body is going through, and understand the anxiety that wraps itself around the years of embarrassing moments thanks to being rare. These people can relate to me in a way no one else can. They can share their embarrassing stories or discuss how they have also developed anxiety with regard to social situations and eating in front of people. They make me feel heard, understood, and like I’m not crazy. Connecting with other people in the EoE world has meant so much to me.
The Silver Lining
I could go on and on complaining about how having a rare disease is awful, exhausting and both mentally and physically taxing. I could talk about how isolating it is feeling like no one truly understands. But, I’m here to tell you there is a silver lining to having a rare disease. Speaking of being rare, in the words of Selena Gomez, “I know that I’m special.”
Being rare means you are a warrior.
It means you an advocate for yourself.
It means you a fighter.
It means you are independent.
It means you more empathetic as a human being.
It means you have become a good listener.
It means you are patient.
It means you are a FANTASTIC researcher.
It means you have compassion.
It means you are detail oriented.
It means you are a planner.
It make you appreciate good days.
Being rare makes you take care of your body.
For me, being rare has made me understand anxiety.
It’s made me so aware of my surroundings. (If anyone needs to know where the washroom is at literally any given time, I got you.)
It’s made me realize my self worth.
Whether I wanted it to or not, my rare disease has played such a huge role in who I am today.
Wherever I go, it follows, so I might as well see the bright side.
To my fellow rare warriors, I see you, I hear you, and I understand.
Sincerely,
An extraordinary rare disease warrior