Passionate About the Palm Beach area
and the Moms Who Live Here

Mommying with an Invisible Illness

As women it’s often hard to talk about our weaknesses. After all, we are usually the one in the family who feels the most responsibility to make sure everyone else is cared for and happy. We don’t want to talk about what’s hard for us when we are so focused on making things right for everyone else.  Also, it can feel wrong to talk about something like an autoimmune disease when there are people out there with bigger problems, like fighting cancer, but I feel it is also important to acknowledge these illnesses that over 50 million people suffer from, in hopes of bringing awareness. The reality is that just because someone appears healthy on the outside doesn’t mean they aren’t suffering from health aliments on the inside. So here’s my story..

The first time I fainted I was sixteen years old and out to eat with my mom. I woke up on the dirty brown floor surrounded by strangers and a distraught mother. In the years to follow, I fainted in more places than I can remember. But I also played highly competitive soccer and managed to run and play for 90 minutes each game. I never mentioned to my parents, friends, or coaches that during most of those games I felt dizzy. It was confusing. During my breaks and half time, I would sit with my head between my knees letting the world refocus as my ears buzzed. To anyone else it would just appear I was winded, but I wasn’t. I was in the best shape of my life but I was dizzy. After a few of my fainting episodes, my mom took me to the cardiologist. They looked at my heart and concluded it was healthy and strong. My resting heart rate was well over 100 but the doctor didn’t seem concerned. So we weren’t concerned. I continued to go about my life feeling dizzy most days but never really mentioning it to anyone. It must just be normal for me I thought.

Fast-forward a few years and after my first daughter was born, and a doctor finally took the time to really listen. He listened to my heartbeat pounding away a 120 as I sat calmly for a checkup and stated he thought I may have something called “POTS”-Postural Orthostatic Tachycardia a form of dysautonomia. He then sent me for what can only be called a marathon of testing and after a very eventful “tilt table test”, with my heart pounding wildy around the 160’s it was confirmed officially I was indeed suffering from POTS. Having a diagnosis was helpful but also disheartening as I learned there is no cure; eat more salt, drink more water and don’t drive too far (for fear of fainting) is the advice I have been given. POTS patients can experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration (brain fog), shaking, fainting, coldness or pain in the extremities, chest pain and shortness of breath.  I personally can’t remember the last time I had a day when I didn’t feel lightheaded or dizzy at least once. My legs go numb at some point nearly every day and most often while I am driving. As you can imagine that makes being a mom to three small children really hard some days!

But like every other mom out there, I have found ways to push through the days even when it’s tough. For me, that means drinking more water than seems humanly possible. I dehydrate quickly and dehydration makes my heart beat even faster, leading to more dizziness. Holding a glass of water at a party while everyone else sips cocktails doesn’t really make me the coolest mom in the room but alcohol makes me feel worse so I very rarely have more than one glass, if any at all. My beloved coffee, is always decaf. Half-calf if I am feeling desperate for a little jolt. I make sure to sit a lot when I am out, standing too long is also my enemy and makes me feel lightheaded. Hot outside play dates that require a lot of standing are hard on me, so I usually attempt those when I know I have some extra help. At home with the kids, I can play, dance and be silly but take breaks when I need to. Sitting and reading books is always a good way for me to connect with the kids even if I am not feeling so great.  A big struggle is driving. I get dizzy so often and my legs go numb, which the doctors say is from my body not circulating blood properly, that some days driving is a task that feels scary and impossible. I worry terribly about becoming dizzy while driving, so if I am having a day in which I feel “Potsie” I cancel plans to leave the house. Thankfully, my kids schools are literally walking distance and everything I need is within a two mile radius. I am also immensely grateful for Amazon Prime! I try my best to do what I can to feel the best that I can. I eat whole foods, limit as much processed foods as possible, use mostly clean beauty products, walk everyday as it’s a form of exercise I can handle. 

If I am being totally honest, it’s embarrassing to try to explain these limitations to people. I would be lying if I said it’s easy to try to explain to someone why I can’t drive twenty minutes away when I look perfectly fine. Having a condition like mine, can be hard on friendships when meeting new people and I know it’s very hard for people to understand the concept of someone having a chronic invisible illness. Many people associate being sick with symptoms you can see and when you can’t see someones struggle it may be hard to accept. I worry about how my illness will affect my parenting as the kids grow older and become more aware of my limits. But at the same time, I have been living this way for so long that I have accepted that somethings may not be easy for me and that has to be okay. I will continue to try each and every day to do all I can to feel the best I can. I know in my heart my kids will still love me even when they realize I am not the “superwoman” they think they see now. And as I get older, I feel very strongly about only surrounding myself with people who support me and if someone really wants to judge me based on my health issues, than I don’t need them in my life.  I am also holding out hope that there will be medical advances and cures to help those of us suffering in both big and small ways.

If you are interested in learning more about POTS or other similar illnesses please check out: http://www.dysautonomiainternational.org 

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