“Imagine waking up one day and everything being ripped out from under you. One blink and everything changes; suddenly, things I loved to do I couldn’t do anymore. This is a story about hope and what it means not to ever give up.
This was me, 27 years old, five years ago. I was newly engaged and excited to spend my summer planning my wedding while my fiancé studied for the bar exam. My life, however, had other plans and nothing could have prepared me for what lay ahead. But, you can’t plan for illness, can you? It strikes hard and fast. It doesn’t discriminate, have boundaries, or care about your future plans.
It was August 12, 2016. My husband and I were on vacation in Barcelona to celebrate our engagement. I had a minor head cold just before leaving for Spain. When we arrived, I was exhausted, lightheaded, and dizzy. This was my warning. My body was preparing to shut down.
On day three of our trip, we took a cable car ride to see the sights from high above. Suddenly, standing in line became difficult. As I stepped into the cable car my entire body was shaking. I felt nauseous and began to sweat. I sensed something was about to occur. As we approached the end of the ride I looked at my husband, Stephen, and I told him, ‘I’m going to pass out.’ I passed out a few times as a child, so I knew the feeling. This feeling, however, was much worse.
I blacked out and woke up on a bench with Stephen standing over me saying, ‘Ashley, can you hear me?’ Little did I know this would be the beginning of a long journey, one that I share with others to inspire those with chronic illness to never give up and to know that you are not alone.
I consulted eight doctors before finally being diagnosed with Postural Orthostatic Tachycardia Syndrome, i.e., POTS, a form of dysautonomia. Currently, there is no cure for this illness that affects up to three million Americans. In short, Dysautonomia means that one’s autonomic nervous system doesn’t work properly. Our bodies cannot regulate the most common, and necessary, functions, such as heart rate, blood pressure, breathing, digestion, and temperature to name a few. Accordingly, our bodies must compensate and work in overdrive. This leads to many symptoms, including fatigue, headaches, nausea, reduced concentration, lightheadedness, and fainting.
As a result of POTS, I could not stand for more than a few minutes without feeling like I would soon faint. The most typical things I never thought about suddenly seemed impossible. There were many days that I could not stand in line, shower, or walk up the stairs.
Some things you cannot see. People told me I looked ‘fine.’ Others suggested I was lazy and that it was all in my head, ‘You’re just anxious.’ While chronic illnesses might not manifest itself on the outside, they try to tear us apart. I constantly battle with my body. Every second, minute, and hour of every day. I knew something was wrong, and I continued to fight to find the answer.
With chronic illness comes loneliness, isolation, anxiety, and depression. I spent a lot of time grieving my old life. I was angry at my body for failing me. I asked ‘why me?’ I lost friendships, and I fought with my family. I wanted everyone to understand, but how could they? It is impossible to describe standing up and feeling like I just ran a marathon. I was also anxious about going out into the world for fear of not feeling well or passing out in public.
I quit my job and postponed our wedding as I needed around the clock care. Shortly thereafter, I was admitted at Duke Hospital and had my first tilt table test, which is a common test to diagnose POTS. The test is designed to mimic what it feels like to be upright and put under extreme pressure. If tested positive, a patient’s heart rate will increase by 30+ beats per minute within the first ten minutes of standing and in some cases, like mine, have a significant drop in blood pressure.
Common or not, the tilt table test was the hardest thing I ever experienced. I was strapped to a table, hooked up to an IV, and a blood pressure and heart monitor. My doctor suddenly raised me to a standing position, and within ten minutes my heart rate spiked to 150 and my blood pressure tanked and then the unthinkable happened. I flatlined. My heart stopped for thirteen seconds, and I was officially diagnosed with POTS. Finally, I could identify the horrible monster that invaded my body.
When I came to, my doctor asked me to describe my wedding dress. She explained that she needed to implant a heart monitor into my chest and wanted to ensure it was not visible through my dress. A tear trickled down my face. I squeezed her hand and thanked her.
After almost one year, I regained enough strength to walk down the aisle and marry my best friend in an intimate family wedding. For better or worse took on a whole new meaning because we had already been through so much together. I am forever grateful to Stephen for sticking by me. He has held my hand, bathed me, made delicious food when I couldn’t cook my own meals, comforted me in my most anxious moments, and helped me complete tasks on days that I struggle. Of course, we have had our moments of extreme hardship, as anyone does who is battling an illness in a relationship. But through it all we are stronger together.
When I stop and reflect, I realize how lucky I am to have an amazing team and support system to lean on through the good times and bad. I am incredibly grateful for my family for taking care of me when I needed them most, and for taking the time to learn about what I was going through. While this illness was happening to me, my family was going through their own struggles with my diagnosis.
There are so many unknowns with chronic illness. Having children is one of them, but I always imagined starting a family; it’s something I have wanted since I was a little girl. Growing up with two younger sisters, I wanted to start my own girl tribe. With POTS, however, I didn’t know if I could soon start a family, if ever. Would I ever have the energy to be pregnant and raise a child? Could my new bundle of joy have POTS? So, I surrounded myself with a team to help guide me and make the best decisions. I was told that if I wanted to have children, I should, but that there was no guarantee what might happen next, to me or to my baby.
The first trimester of my pregnancy was very challenging. I was sick 24/7, which exacerbated my POTS symptoms. This was triggering for me because I sensed that I was regressing physically. Luckily I started to feel better during the second and third trimesters.
At 36 weeks and four weeks early, I gave birth to the most beautiful baby girl. I was visiting my high-risk doctor, who discovered a blood clot forming in my umbilical vein. I’ll never forget her words: ‘we need to deliver this baby within the next 24 hours.’ I had taken birthing classes, but I didn’t expect this; I hadn’t even packed my hospital bags! The next morning I had a c-section, and I was terrified. I didn’t know how my body would react, but I knew that I could do hard things.
On October 9, 2020, our baby girl came out kicking and screaming, weighing in at 5 pounds 9 oz and 17.5 inches long. She is my miracle baby. She is the reason I continue to fight POTS every day. I must be strong for her and for myself, and I want to teach her what it means to be brave.
Motherhood with POTS teaches me I am not perfect. I can’t do it all, and I must ask for help. I will have to explain this to my daughter one day, why mommy can’t do some things, but I am learning to live in the present. I know that I am stronger than I was five years ago.
The road to managing life with POTS has been a rocky one, but I have vowed to never give up. I worked harder than I had ever worked before to help myself to get to a better place. I have spent every single day doing some form of exercise or movement. Every day may look different, but I try to show up even when it seems impossible. I have also worked with a POTS trainer for four years to help regain my strength. I started on the recumbent bike for five minutes, working my way up to 30 minutes without needing to lay down afterwards. Today I am able to stand for longer periods of time, walk longer distances without needing to sit down, socialize with friends and family, take care of my daughter, and start a business.
I am very invested in this lifestyle because it has helped me, and I want to support others who struggle with chronic illness. I earned my certificate in Integrative Health Coaching and started my own health and wellness company, Wellness with Weiss. There are many things I wish I had known when I was first diagnosed and there are many things we can do to help make our lives just a little bit easier and healthier.
Taking care of myself, our daughter, and starting my own consulting company, Wellness with Weiss, is a full-time job. I still have bad days and setbacks, but I have learned how to endure and adapt. I don’t know if I will have POTS for the rest of my life, but I am working on not living in fear of the unknown and leaning on those closest to me for support. It takes a village, and I would not be here without hard work, family, and my doctors.
While we cannot control what happens inside our bodies, we have the power to wake up every morning and choose how we will face the day. Although this illness is the worst thing I have experienced, I have learned so much. Chronic illness has taught me to speak up for myself: to be strong when strong is the only option I have; to never give up on myself; and that there will be days that are hard but many days that are good. Let’s embrace the good days and thank our bodies for what it can accomplish. People living with POTS are strong, capable, and we will never quit.
I pray that POTS gets the recognition it deserves as many more people continue to live with this illness, including those with long-haul COVID that are newly diagnosed. If you or someone you know has been diagnosed with POTS, check out Dysautonomia International.”
This story was submitted to Love What Matters by Ashley Weiss. You can follow her journey on Instagram and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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