It has been four years since receiving a diagnosis of postural orthostatic tachycardia syndrome (POTS) and I am still learning how to accept my illness and live life to the fullest. However, the past has been weighing me down. Especially when I reflect on the struggle of fighting for a diagnosis, so I wrote down everything that I wish I could say to those who have made my struggle harder. Here it goes…

Dear Dr. X – I wasted four years of my life because you wouldn’t listen to my symptoms. You couldn’t look past the extra weight that I carried to actually go over my history. To this day, I cannot believe you told a vulnerable 15-year-old girl that she was “too fat.” I told you I played soccer for 10 years and had to stop because of my symptoms. All I wanted was my life back. I knew something was wrong, and if you actually did your job, you could have told me that.

Dear Dr. W – I came to you after the other specialists turned me away. You blamed me for being sick. Then, when you said there was nothing wrong and not to come back… I fell into a very deep depression. My dream was to be a normal teenager again. I ended up inpatient at the pediatric psychiatric hospital at 16 years old because nobody believed me, including you, and I didn’t want to live my life like that. The nurse at the hospital knew it was POTS after describing my symptoms right away… my heart sank when you were the cardiologist waiting in my psych room to evaluate me. You STILL didn’t believe me and even blamed ME for not making a follow up appointment when you specifically said, “do not come back because there is nothing wrong” (your exact words and I know that because they are engraved in my memory to this very day.) Did you really think that it would be helpful to blame a 16-year-old who was already in the psychiatric hospital? I hope you never treat another patient like you treated me.

Dear High School English Teacher – In high school, when I wrote an essay about my invisible illness and depression, you told me nobody really cares. I used that same essay when I applied for a scholarship aimed towards students with disabilities. I proceeded to earn $5,000 for college because I wrote about my disability and experiences. Guess what, people did care and were actually inspired! I even got to go to a banquet and speak when accepting my scholarship. I hope you never underestimate the power of another student with a disability. Please just remember that you never know what that student is going through. You taught me many life lessons through this experience though, and I thank you for that!

Dear High School Gym Teacher – You were a very passionate gym teacher, but when I told you I was feeling lightheaded and had severe chest pains… you told me to keep participating. Just because I didn’t have a diagnosis, you thought I was just trying to get out of gym class. Why didn’t you believe me? I really wanted to be like every other kid. I wanted more than anything to participate, but my health wouldn’t allow me. You made me feel like my symptoms were all in my head. Well, it’s many years later and I finally have a definite diagnosis. I hope you learn to believe your students when they tell you they have real medical problems that could make it dangerous for them to engage in gym class. Please remember, some students have disabilities that are considered invisible illnesses which means that you may not be able to psychically see that they are sick.

Dear ER Doctor I saw the first night I passed out – No, fainting is not a normal teenage girl thing. I want to know why you didn’t run any tests or give me fluids when I came to you after passing out for the first time in my life. I might have been saved from years of suffering if you took my orthostatic vitals. I had chest pains and dizziness. Your answer… it’s normal for teenage girls. Really, because none of my friends have chest pains, dizziness, fainting, etc.?

Dear Family and Friends – I appreciate your support and I love you dearly, but it is time for you to stop telling me to look on the bright side or it could be worse! It’s very hurtful when you tell me to just try harder to stay out of the hospital because I am trying my very hardest. My hardest is never enough. I appreciate your concern, but you will send me flying off the rails if you tell me to drink more water one more time. I don’t know how many times I must tell you that I can’t drink because of my stomach pain and nausea. That is the reason why I get IV infusions multiple times a week. It feels like you are diminishing my pain and symptoms when you tell me that pain is all in your head… and that I control it. Really, because I would love for a migraine that is a 10 on the pain scale to just go away because I “thought” the pain away. There’s way more going on inside my body than you will ever know, so don’t give me medical advice that you googled. All I need from you is love and support, not advice and judgement.

Guest author Kalyn is 20 years old and living with postural orthostatic tachycardia syndrome. She hopes this will help inspire others to persevere as they fight for their own diagnosis. Kalyn enjoys spending her good days hiking and canoeing with her service dog by her side.

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