Postural orthostatic tachycardia syndrome, or POTS, is a debilitating condition that robs sufferers of things big and small, every day. The ability to hold a job. A night out with friends. Basking in a nice, hot shower. Clarity of thought. But it does not steal the strength it takes to define themselves. Faces of POTS carries a powerful message: We are much more than our diagnosis.
Collaborating with Dysautonomia International, award-wining photographer Adam Jacobs, himself a POTS sufferer, captured 28 faces – resilient, fierce, curious people –
to help raise awareness about POTS. Here are their faces and their stories.
Postural orthostatic tachycardia syndrome, or POTS, is a debilitating condition that robs sufferers of things big and small, every day. The ability to hold a job. A night out with friends. Basking in a nice, hot shower. Clarity of thought. But it does not steal the strength it takes to define themselves. Faces of POTS carries a powerful message: We are much more than our diagnosis.
Collaborating with Dysautonomia International, award-wining photographer Adam Jacobs, himself a POTS sufferer, captured 28 faces – resilient, fierce, curious people –
to help raise awareness about POTS. Here are their faces and their stories.
_indefinable_new%20square.jpg)
Faces of POTS aims to show the faces, expressions, character and empowerment of those living with the myriad of invisible symptoms that POTS presents, in a visual patchwork of determination, advocacy and positivity.
_resourceful_LOWER%20POS.jpg)
_resourceful_8_27-%202_d.jpg)
Postural orthostatic tachycardia syndrome (POTS) is a debilitating neurological disorder that impacts millions of people around the world. POTS can impact your ability to work or attend school, to socialize with friends and it can make everyday tasks very difficult. As a result, people with POTS are often defined by their diagnosis, but we want the world to know we are much more than our diagnosis.
Collaborating with Dysautonomia International, award-winning photographer Adam Jacobs, who lives with POTS, captured 27 faces – resilient, fierce, curious people - to help raise awareness about POTS. Here are their faces and their stories.
Postural orthostatic tachycardia syndrome (POTS) is a debilitating neurological disorder that impacts millions of people around the world. POTS can impact your ability to work or attend school, to socialize with friends and it can make everyday tasks very difficult. As a result, people with POTS are often defined by their diagnosis, but we want the world to know we are much more than our diagnosis. Collaborating with Dysautonomia International, award-winning photographer Adam Jacobs, who lives with POTS, captured 27 faces – resilient, fierce, curious people - to help raise awareness about POTS. Here are their faces and their stories.
Christian, 19
Fairfax, VA
College Junior
​
“Everybody faces adversity in their lives. I was diagnosed with POTS in 6th grade and was out of school for three years. Even when I was most down, music lifted me up. When I was well enough to attend school, I immersed myself in my studies. I started running as well. It was a struggle at first, but the only way that I knew I would get better was to keep going. In 2017, I was named ‘All-District’ in the two-mile race and became captain of my cross country and track teams. I am now at college in two performing arts groups and I run every day. Adversity doesn’t define who you are; it’s how you face it that does.”
Amylin, 25, and Gibbs
New Brunswick, NJ
Clerical Assistant
​
“I look at life like, ‘OK, what can I do to accomplish whatever it is that I need to get done, with my limitations? What’s possible?’ You need to find ways and things that work for you that still gets the job done. The number of tiny, weird accommodations that I’ve made within my life are a huge part of me getting through the day. Like taking a shower - it’s very difficult. Young adults poo poo having a shower chair. But be resourceful. Maybe you decorate yours so it doesn’t look like a grandma chair. You want to have a feeling of accomplishment – even if it’s just getting out of bed. Take these as victories, and don’t compare them with other people. What you do for yourself is what’s important.”
Natasha, 29
Philadelphia, PA
Public Health Advocate
​
“I always set goals and try to meet them – if they’re small, daily, hourly or long-term. I work every day to meet them. To me, those goals mean happiness. Find the motivation, really search and find it. It doesn’t have to be school or work related. I’m motivated by my family, my support system, my dog who I have to walk every day, and my advocacy. Find something you’re passionate about that can motivate you to complete those goals.”
not approved
Anna, 50
St. Petersburg, FL
Instructional Designer
​
“Being bold allows me to push myself beyond the usual limits, daring to have the courage to persevere. In the moments when I want to give up, the true person – who I am – just keeps going. I want to be as unrelenting and unapologetic as this illness. I want to live, whatever that life is going to be, I want to live.
Niko, 26
Wilmington, DE
Physics Student
​
“I think the world is fascinating and I love learning about it. The opposite of depression is not happiness, it’s curiosity. It’s wanting to know what comes next in your life, knowing what secrets the world has, meeting new people, finding out what life has in store for you. I’ve had to adapt so much – I was out of school for five years – but I realized I could do so many meaningful things. And I keep learning.”
Hanna, 29
Brooklyn, NY
Partnerships Manager
​
"Being sick has not diminished my ambition. It’s important to say that because I believe people with chronic illness are often underestimated. There have been moments when I’ve been too sick to act on my ambition, but that doesn’t mean it went away. If anything, it grew stronger. Chasing goals while having POTS has forced me to be more patient and creative, question convention, actively prioritize, and advocate for myself. In short, because of POTS I’m a better problem solver. And being a better problem solver means I can accomplish even greater things with my ambition.”
Matt, 26
New York, NY
AdTech Consultant; Former Professional Soccer Player
​
“Having POTS has made me more perceptive about others, more empathetic. As a patient, you have to be more perceptive about yourself – how far can I push myself today? Do I need a break? You have to be very in touch with yourself. The last piece is how people perceive you and how you perceive yourself. Even though we’re all struggling internally, and trying to push on, you can portray yourself in a way you can still be proud of. People call it an invisible illness so it’s important for each patient to define themselves. How you do that is the most important thing.”
Emily, 28, and Marley
Howell, NJ
Virtual Assistant for Sight-Impaired People
​
“Life has thrown me a ton of curveballs health-wise. Turns out it’s really hard to kill me. Regardless of what health issues come up, I keep going, no matter what. Learn to accept your chronic illness and live the best you can and help others to find that in themselves. You need stubbornness to find that acceptance.”
Alexandra, 22
Manasquan, NJ
Nursing Student
​
“I am worthy of respect, I am worthy of opportunities, worthy of being understood and worthy of a life everyone else gets to live. Trust yourself and go with your gut and know you’re not going crazy. Once you get used to things, it’s easier not to give up.”
Ashley, 29
Columbia, MO
Filmmaker
​
“I’ve been an artist since I can remember, always singing, painting, writing, and dancing. I’m still an artist and being artsy is a way I can be myself despite my new normal. It may look different these days but I enjoy finding creative ways to continue my passions.”
Erin, 16
Norwood, MA
High School Student
​
“I’m a fierce competitor in sports – basketball, softball and golf. I finish my cardio fitness program and running every day. I use that strength to help me work towards my recovery. Even though you feel like your life has taken a big turn, you can turn it into a positive. If there is any sentence that says you can’t do something, add ‘not yet’ to it. ‘Not yet.”
Taylor, 24, and Jay
West Chester, PA
Dysautonomia International Volunteer
​
"I'm passionate about helping others advocate for and raise awareness about dysautonomia. I don't want other patients to feel alone like I used to. There are a lot of us out there who can relate to one another, so with more advocacy and awareness we can fight this together. I want others to feel just as passionate as I do - just get the word out so more family and friends can understand what we're going through and more doctors can be aware to treat us. The passion really helps me find my own voice and my confidence again, to be able to give what I have to offer."
Molly, 19
Scarborough, ME
College Student
​
“I missed my entire 8th grade year, had many absences in high school and was told I wouldn’t graduate on time. Resilience is being able to push through despite all the challenges, daily pain and hospital stays. Instead of getting down about being in the hospital monthly, I decided to see the bright side. While in the hospital I met Collin, age 10, who was always there when I was, and we literally became best friends; making Rice Krispie treats, reading books and building Legos. I also grew close to a number of nurses who inspired me to pursue nursing.”
Nichole, 37
New Milford, CT
Clinical Psychology Student
​
“My friends and everyone refer to me as the ‘Ultimate Warrior.’ It took a long time to get diagnoses after waiting 20 years. Doctors told me I was crazy. I’m just focused on trying to help other people, getting involved as much as I can in advocacy. I don’t want anyone to have to go through what I did. But I finally finished my BA - it took 17 years - and I applied to Harvard as a joke and got in! Huge accomplishment. How do you say no to that? Hopefully, it won’t take 17 years to finish it. I want to counsel patients with chronic illnesses.”
Lydia, 66
Denver, CO
Manager, Corporate Relocations
​
“When I was first diagnosed, I lost faith and hope. To move forward, you have to have courage. Once you have that, it’s possible to do anything. If you look forward, knowing that at every moment things can change, there’s courage in that. You can’t have courage without being positive. When I feel terrible, I just do something that brings positivity into my soul - like get up and walk around the office and talk with people. And set goals. Write it down and you declare it. Makes it easier for things to be cheerier.”
Elyse, 48
Gaithersburg, MD
Social Worker/Therapist
​
“My POTS journey has allowed me to deeply understand pain, fear, illness - and equally allowed me to experience triumph, joy, celebration and true happiness The deeply profound emotions others go through, whether they have POTS or other chronic illness is part of the shared journey we’ve been on and continue on. I know what it feels like to not feel well but to get up and roll with the punches. I also know what it feels like when you feel your best and cherish what you have so you can live your best life. Nothing helps me more when I listen to a client share their story.”
Caleb, 16
Stillwater, OK
High School Student
​
“Being desperate is not a bad thing. A hungry lion is more desperate than a satisfied lion, right? I’m not a lion, but I’m hungry for a cure. I’m desperate not to need help. Personally, I don’t want to be seen as ‘special.’ I don’t want to be looked down upon, I want to be seen as equal. I want to be seen as a strong kid, not just physically, but mentally. I want to help other people. I’ve gone through a lot so it makes it easier to do that. You know those moments with people that give you joy? I want to create multiple moments like that.”
Savannah, 24, and SSD* Bahama
Bowie, MD
College Graduate
​
“Whenever I wanted to give up, I was led to keep going by the people around me or my doctors. Sometimes you feel like you’re a burden to a lot of people, your family, with all the bills and expenses. There were times I thought I’d kill myself and save them some money. But every day is a blessing and a challenge. I’m fighting to live a life like everyone else and to do the things that everyone else does. I’m a warrior.”
​
​
* Susquehanna Service Dogs
Aubrey, 12
Woodland, CA
6th Grade Student
​
“I know that all of us go through hard times, but how we react is what matters. I know I can push through and overcome them and live the life that I want. I had to stop playing basketball, but I kind of like softball and soccer better. When I play soccer, I can’t feel my legs but I don’t want to quit and let my team down, so I push through. My motto is, ‘Mind over matter.’ My dream is to play on the USA National Team.”
Taylor, 48
San Diego, CA
Physician
​
“Perspective means seeing the big picture. On the patient side, it means the sickest hours are very challenging, but it’s necessary to find hope and courage that there will be a better day. On the physician side, it is new found empathy for patients with complex medical diagnosis that are not well described and for which there are limited treatments. You don’t know what everyone is going through. When you’re the patient, it’s hard to explain. Everyone has challenges; this one happens to be yours. Another perspective is, everything is always changing in this world and there’s no reason to expect that this will not change for the better.”
Sarah, 28
Norwalk, IA
Student
​
“Someone once told me, ‘Hold on, pain ends.’ That’s what Hope stands for: we need to hold on, pain ends and we have a brighter future in front of us. Never lose sight of your goals and dreams. Having hope in your heart makes you feel determined, inspired to keep going. For anyone struggling with POTS, let them know there is a light at the end of the tunnel.”
Martina, 49
Philadelphia, PA
Nurse
​
"Thirteen years ago, I was searching for answers to multi-system symptoms that worsened after an injury. Many years later, I found Dysautonomia International and discovered I too had these symptoms and how they are all related. I was on one side of the bed as a nurse and now I'm on the other side as a patient. I realized the disconnect and want to help educate practitioners that what they see in the first 5-10 seconds is not who we are. We are people who are struggling every minute of every day and putting on a brave face doesn't lessen the severity of symptoms we live with each day."
Helen, 34
Sylvania, OH
Artist
​
"In many ways, being an artist and having a unique disorder both require 'out of the box' thinking that is unconventional, so in that way they complement each other. Coming up with creative solutions to ever-changing problems, and being adaptive is often unconventional. It's an ability to go with the flow."
Sara, 23
Philadelphia, PA
Occupational Therapy Student
​
“I was afraid to talk to people. I was afraid of humans. I was very shy, very quiet. I guess I never felt like I had anything worth saying. Now, I’ve gotten more confident. I had to get knocked down and get sick before I learned to speak. It’s almost like I now have a purpose and I have to talk about it. I use my patient lens in clinic. Yeah, the silence can be dark, but in the silence, I found my voice.”
Cindy, 59
Clearwater, FL
Retired
​
“My first sign of illness came when I was 8 years old, so I have been on a search to find out what’s causing all this for 50 years. In all that time, I never put myself first. I just worked myself into bed. But this year – my kids are gone, I’ve closed my business - it’s now the year of discovery and it will set me free. Not just from dysautonomia, but living with other chronic illnesses. Every part of my life has changed - it’s all about how you alter your life. I have to seek out and discover what is the best life I can live.”
Sarah, 21, and Daisy
Pottstown, PA
Film Student
​
“I spent most of my adolescence trying to conform to everyone else’s standards of beauty, health, and general living. The moment I was able to be the one to define my journey and who I am as a person was really when my life began. A lot of POTS is new to me. The reliance I’ve built from a mental health perspective is why I was not knocked to the floor. I was able to make adjustments in how I viewed life and kept going. Everything I do is about breaking barriers and showing you’re the only person who can define yourself. I compete in pageants. Not many girls who have no hair compete in pageants.”
Adam, 34
San Francisco, CA
Fine Art and Commercial Photographer
​
“Having an invisible illness presents many challenges. Debilitating daily symptoms are so often hidden behind a brave face, an act put on to maintain one's sense of self worth and dignity. Just because symptoms are invisible it doesn’t mean they don’t exist; it's important to recognize they are very much real. However, importantly, they don’t have to define us. In fact, with acceptance, determination, courage and strength it is possible to thrive in our everyday lives in spite of them."
Please support
people with POTS
by donating to
Dysautonomia International's
POTS Research Fund.
​
This project aims to show the faces, expressions, character and empowerment of those living with
the myriad of invisible symptoms
that POTS presents,
in a visual patchwork of determination, advocacy
and positivity.
​
Get involved in the
Faces of POTS
movement.
​