{"id":884,"date":"2019-02-19T22:05:28","date_gmt":"2019-02-20T03:05:28","guid":{"rendered":"http:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/?p=884"},"modified":"2019-02-21T11:39:27","modified_gmt":"2019-02-21T16:39:27","slug":"to-those-who-made-my-struggle-harder","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/to-those-who-made-my-struggle-harder\/","title":{"rendered":"To Those Who Made My Struggle Harder"},"content":{"rendered":"

\"Struggle\"<\/a>
\nIt 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…<\/p>\n

Dear Dr. X – I wasted four years of my life because you wouldn\u2019t listen to my symptoms. You couldn\u2019t 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 \u201ctoo fat.\u201d 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.<\/p>\n

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\u2026 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\u2019t want to live my life like that. The nurse at the hospital knew it was POTS after describing my symptoms right away\u2026 my heart sank when you were the cardiologist waiting in my psych room to evaluate me. You STILL didn\u2019t believe me and even blamed ME for not making a follow up appointment when you specifically said, \u201cdo not come back because there is nothing wrong\u201d (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.<\/p>\n

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!<\/p>\n

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\u2026 you told me to keep participating. Just because I didn\u2019t have a diagnosis, you thought I was just trying to get out of gym class. Why didn\u2019t you believe me? I really wanted to be like every other kid. I wanted more than anything to participate, but my health wouldn\u2019t allow me. You made me feel like my symptoms were all in my head. Well, it\u2019s 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.<\/p>\n

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\u2019t 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\u2026 it\u2019s normal for teenage girls. Really, because none of my friends have chest pains, dizziness, fainting, etc.?<\/p>\n

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\u2019s 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\u2019t know how many times I must tell you that I can\u2019t 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\u2026 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 \u201cthought\u201d the pain away. There\u2019s way more going on inside my body than you will ever know, so don\u2019t give me medical advice that you googled. All I need from you is love and support, not advice and judgement.<\/p>\n

\"IMG_3859\"<\/a>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.<\/em><\/p>\n\"Facebook\"<\/a>\"twitter\"<\/a>\"linkedin\"<\/a>\"youtube\"<\/a>\"vimeo\"<\/a>\"instagram\"<\/a>\"mail\"<\/a>by <\/span>\"feather\"<\/a>\"Facebook\"<\/a>\"twitter\"<\/a>\"reddit\"<\/a>\"linkedin\"<\/a>\"tumblr\"<\/a>\"mail\"<\/a>by <\/span>\"feather\"<\/a>","protected":false},"excerpt":{"rendered":"

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 … Continue reading To Those Who Made My Struggle Harder<\/span> →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-884","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/884","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/comments?post=884"}],"version-history":[{"count":8,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/884\/revisions"}],"predecessor-version":[{"id":898,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/884\/revisions\/898"}],"wp:attachment":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/media?parent=884"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/categories?post=884"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/tags?post=884"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}