I’m finally sharing my story… because you might know a teen just like me

POTS awareness

Some of y’all might know that I do online school. I think the thing that most people wonder, but rarely ask, is why the heck did you switch from regular school to online school? Well, the answer is short: I was sick. And not a “dope” or “too cool for school” kind of sick, but a “I can’t get out of bed” kinda sick. I have something called Postural Orthostatic Tachycardia Syndrome or POTS for short. It sounds scary, but I promise it’s not. I’m doing great now that I have a diagnosis.

But getting a diagnosis wasn’t easy, because POTS isn’t a well-known condition. I’m writing this post today because I want to spread the word about POTS and change that fact. I don’t want attention for myself, but I do want to draw attention to POTS because there isn’t enough knowledge about it. So, on to my story, which is a common one among us POTS folks: I was sick for almost two whole years with mono-like symptoms. However, mono didn’t show up in my blood tests. In fact, nothing showed up in my blood tests, so nobody believed I was sick. Not even most of the countless (well, I sort of counted, it was around 15) doctors who examined me over 2 years. Almost all of them told me that I was simply “depressed” or “whatever is wrong with me is un-medical.” Two years of doctors telling me that my illness was all in my head got frustrating. Super, super frustrating. I started to believe I wasn’t sick - even though deep down I knew that I was - which was probably the worst part of all of it.

Thankfully, my parents never gave up searching for an answer to my mystery illness, even though doctors told them I was fine. They got me into Mayo Clinic which diagnosed me within the first 30 minutes of my first appointment (although I stayed there all week for tests to confirm it).

As I said, the reason I’m writing about my journey is (1) to spread the word about POTS and (2) to help other teen girls with POTS - boys too, but it occurs mostly in teen girls and pregnant women. I’d love to spare as many people as possible from wasting weeks, months, or, like me, years of their life questioning or doubting their condition.

So if anyone (teens, younger or older) you know has the following symptoms, please let them know about POTS so they can talk to their doctor:

-racing heart
-low grade fever
-blue/purple legs when standing too long
-extreme fatigue
-headaches
-fainting spells
-stomach pains

These are just a few of the symptoms, but they change from person to person. I don’t want anyone to think I’m offering medical answers. What I am offering is a way to spread the word, to share my story to so others can read it and identify with it, or maybe open people’s eyes to some questions they might be able to ask their doctors who might not have had heard of POTS.

Thanks so much for taking the time to read this, and for helping spread the word about POTS! If you have any questions, then feel free to leave a comment. I promise to read every single one of them!

xox ~ chloe

 

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  • http://gaelynsheartofiron.blogspot.com/ Gaelyn Cokayne

    Thanks for sharing this - I had never even heard of POTS before this so it’s really great to learn something new!

  • http://www.brightboldbeautiful.com/ Laura Trevey

    Hi Chloe, thanks for letting use know your personal story. I am so happy for you that someone finally got the diagnosis right. You are so brave to put the message out there and spread awareness too. For that, I applaud you!

    xoxo

  • Kimber Ashley

    How brave of you to share this story. Thank goodness your parents were your advocate and kept searching for answers! Even if just one person reads this and has an “ah ha” moment or is now empowered with this info, you’ve done your job! Thank you! ~A

  • Geralin Thomas

    Chloe,
    What a story! I’m happy to hear you have a diagnosis and are willing to share your knowledge with others; many will find this helpful I’m sure. 15 Doctors is a lot of doctors - I hope they see this post and maybe they’ll learn more about this as well for future patients like you. Best wishes for a happy and healthy future.

  • Rea Alducente

    I admire you for sharing this story. Thanks for posting this! Feel blessed because you have a family that supports you. Get well soon! :)

    REAlity Bites

  • http://www.acolourfulcanvas.blogspot.com/ Sue @ A Colourful Canvas

    The power of blogging. Good of you to share this Chloe. Wishing you good health!

  • http://stylistsmag.blogspot.com/ feetpush

    Wow. You are an amazing teen to have gone through that. Thank you for sharing your story!

  • Wanda Hoffs

    Chloe so happy to hear you are feeling better! Good for you for sharing your story to help other teens! How inspiring!!!

  • http://sofawned.com/ Desiree Fawn

    You’re awesome for sharing this! :) Wishing you all the best — you rock, Chloe!

  • http://www.fortsmithstylista.blogspot.com/ Jan Graham-McMillen

    One of the toughest things is to deal with a debilitating health problem that doesn’t show. I’m so happy that there’s treatment and that it works for you! I have a couple of issues that are not immediately apparent ( not uncommon in old ladies!) so I know what you mean. I hadn’t heard of POTS either, so I’m glad that you wrote this informative post.
    So happy that your parents kept after the diagnosis. All doctors are not created equal, and young women often get short changed as a matter of course.

  • Jennifer Gerlach

    Thank you for sharing your story. I am so glad your parents never gave up. and that POTS could be treated.

  • http://www.eatprayreadlove.com/ Kelli@eatpray{read}love

    Chloe, thanks so much for sharing your story! I am glad that you have a diagnosis and are doing well. My son was born with a rare liver disease, and the diagnostic period was the scariest time. Which online school do you attend?

  • Jenn, Endlessly Inspired

    How brave of you to deal with that for so long and then think of others once you were finally diagnosed. Wishing you the best of luck!!

  • Jae Mac

    Wow. I can’t believe you saw over 15 doctors before you were diagnosis with POTS. I am glad to know your parents never stopped looking for answers. I am wishing you the best of luck towards a healthier future.
    Jae Mac @ I’m Just Sayin’…(Damn!)

  • Megan @ EducationPossible.com

    Thank you for sharing your story - how brave!! I’m glad that you are doing well. It is so nice that you get to take care of yourself and still do school

  • Twingle Mommy

    That must have been so frustrating to see so many doctors and not get an answer. I’m glad you finally did and you can now take care of yourself.

  • Dangerous Cupcake

    I second the commenter below mine — so frustrating to have to go through an ordeal just to get an answer! I’ve never heard of the illness, but with an 18 yod, I’m glad to have learned about it. Thank you for sharing! I’ve heard wonderful things about the Mayo Clinic, glad they were so awesome!

  • brokefiercefab

    Thanks for sharing. Now that you know what’s wrong what do you do to treat it?

  • http://www.popcosmo.com/ PopCosmo

    I have to drink a ton of water, eat a lot of salt to keep the water in, and exercise!

  • http://www.popcosmo.com/ PopCosmo

    Thank you for reading! The Mayo Clinic was seriously one of the coolest and most awesome places I’ve ever been - besides New York and Disney World! ;)

  • http://www.popcosmo.com/ PopCosmo

    That’s so scary about your son! I attend Laurel Springs which is a K-12 school. I can’t begin to explain how wonderful my teachers have been - it really is a great school.

  • http://www.popcosmo.com/ PopCosmo

    Unfortunately, I totally agree about young women being shorted. It’s so terrible! But I was lucky enough to have a fantastic pediatrician by my side throughout most of it!

  • DeDe Bailey

    Wow, 2 years is a long time having Dr.s guess what was wrong. That is why they have a practice, they are practicing medicine! I am so glad you found the source and now you can understand and treat the correct disease. Awareness is the key!.

  • Deedra

    Thank you for this information. I know that knowledge is key to anything in life so this info may come in handy someday. I do hope you feel better and enjoy your online learning. I attempted online last year just to find out it was not for me. I was so bummed out.

  • Laurie Lyons

    Wow, who knew? It sounds like a long 2 year process for you. I’m glad you finally got a diagnosis and wish you the very best. So cool that you are spreading the word.

  • Robin

    Thanks for sharing your personal story, that’s not always easy to do. I also want to thank you for all of the information. You’re amazing!!!

  • Gena Mayo

    Praise God for an accurate diagnosis. So thankful for the Mayo Clinic. They do wonderful work. (My last name is Mayo. I tell people it’s like the clinic, not the condiment. :) . ).
    -Gena

  • Remona Gopaul

    Thank you so much for sharing. I wasnt even aware of this disease! I wish you well.

  • Kimber Ashley

    What a tough situation! I can only imagine… I love that you are brave and bold in telling your story! You never know whose life it may change! ~K

  • MotherhoodDiaries

    Thank you so much for sharing your story - you are such a tough person! I would l love to raise awareness of POTS on my new magazine for parents, if you’re interested?

    Leyla
    http://www.motherhooddiaries.com
    x

  • Krissa Jeldy

    Wow, thanks for sharing. That must have been so frustrating to be feeling so sick and not have any answers for so long. I’m glad they got it figured out and I hope your health improves!

  • Sarah Ruszkowski

    Thank you for sharing your story!!!! And it I think it is awesome to see a mother/teen daughter blogging team. :-)

  • Becky Willis

    Chloe, thank you for sharing your story. I love that you and your mom blog together, too! All in all, this is inspirational for other teens, and I am sure your experience with POTS will help others understand, too. Kudos!

  • Val Frania

    Good job, Chloe. Get the word out any way you can. Too many people out there are looking for answers for mysterious symptoms that too often are overlooked or doubted. Knowledge is power!

  • Travel and Financial

    Very brave of you to share your story! How frustrating it must have been to be sick and not know why and not be able to get any answers. I’m sure a lot of people out there may be in similar situations. I’m glad you were finally able to find out what was wrong and get the treatment you need.

  • http://amovingstory.com/ kim @ AmovingStory

    thank you for highlighting your illness in an effort to hellp someone else. posts like this are so important.

  • PamIW

    Thanks for sharing your story. Glad you were able to figure it out and get the proper treatment for it. This information is important information and should be shared. I hope you are doing well!

  • http://www.popcosmo.com/ PopCosmo

    Thank you! I hope that I can help others understand, that would make me feel so great!

  • http://www.popcosmo.com/ PopCosmo

    thank you for reading!!!

  • Pam Allen

    Thank you so much for sharing this with us. I’m so happy you were able to find out what was wrong. Going to the DR is not fun so I know having them say nothing was wrong was frustrationing, kudos to your parents for not giving up! Thanks for the info and I can say I have never heard of it either but now I have- thanks to you!

  • Sara

    That is so scary that it took you 2 years to find a diagnosis. I have never heard of POTS so you have totally achieved your goal by helping to educate your blog readers. Thanks for sharing!!

  • SeasonedSistah2

    I am so sorry you had to wait so long for a proper diagnosis of your illness. I certainly will spread the word so that others will have information on this “rare diagnosis.” It is sad you had to wait two years for a proper diagnosis.

  • Amber

    Thanks for sharing! I too had to search and search for diagnosis for a chronic illness before finding answers. I have never heard of POTS so thanks for educating :)

  • Lani

    Thank you so much for sharing! My daughter had a sports injury in her back a couple of years ago, but it wasn’t showing up in any of the scans that they did. As with you, many doctors tried telling her it was in her head. We were finally able to get her in to see a sports specialist who diagnosed the problem within five minutes. I’m not sure what was worse … the injury itself or not having anyone believe that there was really something wrong with her. I’m sure you can relate! We’ve homeschooled in the past for many, many years, and my kids loved doing school online. I’m sure it’s much better now than it was back then.
    Kudos to you … keep up the great work and keep using your platform here to be a voice for POTS.
    Blessings …
    Lani

  • Peg Crawford

    I am glad you and your parents were able to stick it out and get to the bottom of this. I had never heard of this either but can sympathize with a “mysterious illness” that doesn’t make your look sick. It is hard to hear people say there is really nothing wrong or it is in your head when you know your body better than they. Glad to know you are getting better.

  • Amy @ Butterfly Angels Quiltin

    Thank Goodness your parents believed you! Wow. I’m sure glad you are on the road to recovery.

  • Allergy Annie

    I had never heard of this. Thank you for spreading awareness for it! It takes courage and it is wonderful that you are trying to help others! Way to go!

  • Krista Cannon

    Thanks for sharing. I have also never heard of this and its really good to have the information. Also, your site is super cute!!

  • algene may cutamora

    Thanks for sharing this! This is my first time to hear of such thing. Thank you again for shedding some light to everyone out there.

  • Denine

    Thanks for sharing your story - and helping raise awareness. It’s great that you can attend school online. When we were kids, that option wasn’t available. I’m glad to hear you’re doing better now!

  • Grandma Loy

    You are very brave to share something so personal. Many years ago, my mother dealt with a health problem that the doctors could not figure out. One of the actually said to her, this is what it is called “the practice of medicine.” It must be a very isolated feeling to be dealing with something so rare. Hope that you will connect to others with POTS and that you can build a community to help one another.

  • Rachelle S.

    I am proud of you for taking the time to share your story and help educate others. I have never heard of POTS, so I am glad to have this new knowledge. Good luck in your journey.

  • Leah H

    Wow Doctors now a days are so pathetic. All those symptoms and they try to say nothing is wrong :( Thanks for sharing

  • Holly Williams Urbach

    Glad you are able to help others by sharing!

  • Rosenda

    Yes, I had a good friend of mine who also had this condition. She also began homeschooling in high school. I pray that you get better and stay strong! Thank you for having the courage to share your story. What an inspiration to other young people you are! Keep it up.

  • Angela Pounders

    Wow! What a time you have had! It’s great that you have put your story out there. Hopefully, it will help someone else who is struggling with a diagnosis.

  • talesofapeanut

    So glad that you have a diagnosis! Will be praying for you! And so glad to have the info in my head now in case I need it!

  • http://www.popcosmo.com Kim & Chloe

    I’m so lucky to have such caring and loving parents! I don’t know what I would have done had they not believed in me! Thanks so much :)

  • Abby

    Wow, I’ve never heard of this before. Thanks so much for sharing so that others are aware. That is so great that you finally got some answers.