Have you ever felt lost in your own body? Have you ever temporarily lost your hearing due to massive ringing in your ears? Have you ever had the world go completely silent and see only in grey, then within just a few seconds the world fades to black only to later lose consciousness? Has your heart rate ever skyrocketed so bad you feel like your heart wants to explode? Have you ever had to try and explain these symptoms to doctors who have no clue what you’re desperately trying to make clear?

I have.

I have P.O.T.S Postural Orthostatic Tachycardia Syndrome. This is a life altering condition that changed my life forever. My journey started July 5th, 2011. I woke up with a feeling of impending doom and had no idea what was coming next. I went to my primary care physician at the time and didn’t even stay the visit; I collapsed and they called 911. I was hospitalized and put in the cardiac unit. Things escalated and my body couldn’t handle the waves of symptoms.

There were countless ER trips and hospitalizations. I saw a team of Doctors who just couldn’t figure it out. They didn’t see outside the box. I kept journals of my symptoms and my husband would use his spare time to research anything and everything that would cross reference with my symptoms. He stumbled across P.O.T.S and printed the check list and suddenly all the pieces fit!

We tried hard to present these to several Doctors but not one took us seriously. I finally got a confirmed diagnosis through a Tilt table test. I was put on a regimen of several medications that only exacerbated my symptoms, each medicine causing more damage than the last. Since then, I’ve lost my job due to serval chronic invisible illnesses. They call them invisible illnesses…. but invisible to who? They’re not invisible to the patient nor are they invisible to those who take care of them and truly understand them.

I’m 38 years old and suffer from multiple chronic illnesses. Along with P.O.T.S I also suffer from dysautonomia, chronic fatigue syndrome, Fibromyalgia, Raynaud’s Phenomenon, interstitial cystitis, irritable bowel syndrome, neuropathy, non epileptic seizures, inappropriate sinus tachycardia, severe gastro issues, asthma, anxiety, and depression. They also suspect mast cell activation disorder and dystonia. My life has forever changed.

I have been trying for years to get some much needed awareness for Dysautonomia. It seemed my screams were silent for so long. This year was different! I took a stand not only for me but for all those who suffer from any form of Dysautonomia.

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the ” automatic ” functions of the body that we do not consciously think about, such as heart rate, blood pressure , digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of Dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of Dysautonomia. Despite the high prevalence of Dysautonomia, most patients take years to get diagnosed due to the lack of awareness amongst the public and medical profession. To learn more about dysautonomia click here.

I went to my city mayor’s office and I turned in my paperwork to get the mayor to sign a proclamation to recognize October as Dysautonomia awareness month. Paperwork like that takes 2-4 weeks to process but I got the call from the mayor’s secretary the very next day. This was one of my goals and I achieved it! I can say ” because of me ” we can now #makesomenoiseforturquoise in October, in a month where we’ve always been told to ” Think Pink “.

Many people may ask ” Why do you care so much? ” My question to them is ” Why do you care so little? ” You see, people don’t understand what they can not see. The fact that we’re labeled as having an ” invisible illness ” makes it that much harder for people to understand how truly debilitating such a condition can be. I didn’t do this just for me, but for all of my chronic illness siblings who are in this same fight every single day.

We may be separated by zip codes, area codes, state lines, even countries but WE are in this same battle day after day. Many of us went years being misdiagnosed and looked over by the medical community. There are many others just like me in my own city who have not yet been properly diagnosed, falling through the cracks of a faulty medical system. Doctors and nurses ( whether ER triage or at a physician’s office) and EMTs could really benefit from learning about Dysautonomia so when they come across a patient afflicted with it they can properly assess the situation.

It’s a learning process, even for the patient. I’ve been chronically ill for over 4 years and I’m still learning new important details about my condition. Knowledge is power and there’s power in numbers, so the more people understand this condition the more awareness can be brought to a subject that not many people speak of. The only ones talking about it are those affected and their caretakers. People have told me and other patients ” Oh, but you don’t look sick… Maybe if you got out more you’d feel better… You should exercise, that will improve your quality of life…” Let me ask you this. .. Would you ask the same of a patient battling cancer? Chances are 10 times out of 10 you will never tell that to a cancer patient. Why? Because we know that will not help their situation. Encouragement, understanding, and educating yourself on a patient’s health are the best forms of support anyone can give.

I’ve received amazing guidance from Lauren Stiles and Natacha Pires, both huge advocates for Dysautonomia International. They have me much needed advice and support through my recent work to get the Proclamation. I have nothing but respect and appreciation for the help and leadership skills. I also have my husband to thank for doing his research, because if it wasn’t for him I still would not have a proper diagnoses.

I want people to know that I’m more than just a DIAGNOSES, I’m a fighter, a mother, a wife, an advocate, and now also a CONTRIBUTOR!!!! I will continue.

About the Author: Mari is a new Patient Worthy Contributor. Keep an eye out for more posts by her and check out her facebook page here.