Rachel G.
Age: 19
Diagnosis: POTS, Neurally Mediated Syncope (formerly known as Neurocardiogenic Syncope)
Other Conditions: Myalgic Encephalomylitis, Irritable Bowel Syndrome, and we are on a journey to find out if I have Crohns diseases or Celiac Disease
What was your journey to getting a diagnosis like?
My journey was difficult, but not as difficult as some. I spent a lot of time in an Emergency Room while doctors told me that it was all in my head or anxiety, but once I found my cardiologist, he scheduled me for a tilt table test and I was diagnosed shortly after.
What is your biggest struggle with Dysautonomia?
Schoolwork would have to be my biggest struggle. Because of my fatigue and dizziness, sometimes it is impossible to go to class or get things done. I've learned that on my good days, I need to get everything possible done to prepare for my bad days.
Is there a Dysautonomia success story you would like to share?
In spite of living with a chronic, incurable disease, I have the most wonderful relationships with friends, family, and my boyfriend. We have to make exceptions to everything that we do, but it makes some of my favorite times. Lying on bean bags watching movies drinking Gatorade with my boyfriend is one of my favorite "successes". I am capable of still having a social life, in spite of Dysautonomia!
What are your top three treatments that help you function daily? Well, my medicine is at the top, of course. I am on a total of 18 pills a day. Second would have to be doing things that relax me. The more relaxed that I am, the less symptomatic I am. And lastly would be Gatorade to help keep my blood pressure up.
Who has inspired you most on your journey?
Wow, there are so many people that come to my mind. The top would have to be my boyfriend, Scott. Being in a relationship with someone with a chronic illness isn't easy, but he is always there for me. On my bad days, he's there to just talk to and help as much as he can, and on my good days we are a silly carefree couple. He helps keep me grounded, especially when I'm on a flare up week or something like that. He just reminds me that it will pass and to keep breathing. I honestly could not have done any of my illness journey without him, and he is my biggest inspiration, because although I suffer the physical costs of being sick, he has to suffer so much as well, and he does it without complaining and with a perfect attitude. I love him.
What would you like to say to the public at large about your situation and Dysautonomia?
Dysautonomia is not a rare disease, but it is rarely diagnosed. Just because you can't see that someone is sick, doesn't make it any less that they are. It is called an invisible illness for a reason! Everyone is fighting their own personal battles, just remember that. What might be easy for some, is climbing mount Everest for others.
What advice would you give to a newly diagnosed patient? Never give up! Eventually, you will find a treatment that will work for you! It might not cure you, but it definitely will help. Finding that one medicine that does wonders for you is the best feeling in the world! Find people who love you for you, not because you're sick and get rid of friends who disappear once things get rough. Dysautonomia is a horrible disease, but try to find the silver lining.