Sometimes I feel like there are three sides to my brain: my POTS side, my anxiety side, and my “true me” side. Postural Orthostatic Tachycardia Syndrome, or POTS, can wreak havoc on the body due to a faulty autonomic nervous system.

The autonomic nervous system is the system in your body that controls everything you don’t think about: your heart beating, your lungs breathing, your temperature regulation, and your digestion. Usually, it does the job for you and you almost forget it is there. But that is not my nervous system– it is a beast of its own and it wants to remind me of that… every second of every day. There is hardly a minute in the day that the POTS side of my brain doesn’t give me a reminder of its presence.

Because my brain is signaling to my body, “more adrenaline GO GO GO GO GO!!!” all the damn time, having POTS predisposes me to have bad anxiety. At times, it feels as if the flight-or-fight mode has been set to a permanent overdrive, tricking my body into thinking there is some massive bear about to attack me at any moment. But luckily, I know there is no bear and I tell my body to pipe down because I’m trying to watch Coco in theaters and I really don’t have time for this nonsense.

But then my anxious side begins to get a little lonely. “I am in a movie theater right now… what if I have a POTS attack, or it gets too hot in here and I can’t find water, or the loud noise from the theater produces yet another adrenaline surge?” It’s like lighting a match to a pool of gasoline. My body is already revved up with adrenaline from my POTS side, so even a single anxious thought can light the inferno that becomes a panic attack. And that’s how even watching a children’s movie like Coco can ruin my night.

Having both anxiety and POTS is a vicious combo that I would not want to wish on anyone. At times, it feels like they are taking over my life and leaving very little room for my real self. I feel imprisoned by both my body and my mind and there isn’t too much I can do other than self-care and hope that it gets better in the future. I’m sensitive to most medications, so most of the medication routes are blocked off. In the end, it’s just me. Myself against these two beasts and at times, it can get extremely exhausting.

The most frustrating part about this combo is that both anxiety and POTS are invisible illnesses. In a society that only places “value” on invisible illnesses like cancer, it’s hard to find a place to interact in the world outside of my home without being constantly reminded of my illness. Yes, I do need my walker. Yes, I must carry around a ton of cool packs in the summer. Why? Is it really necessary? Unless you want to sit with me in an ER for six hours just to pay $200 for a bag of salt water, please try and understand that I impose limits and rules on myself for a reason. If I am feeling anxious, it’s literally impossible to “breathe it away” when my body is already amped up. Even if I can shut down the anxious thoughts, I still have to deal with my erratic body panicking out on its own.
Imagine that you just worked a double shift on your feet all day, drank six red bulls, have the flu and now you have to go make a speech in front of thousands of people. That is how I feel most days.

POTS takes away my physical stamina and ability to be active. But anxiety is almost the worse offender at times because it takes away my ability to explore, be adventurous, and to be bold. I would love to just say, “fuck it,” and go out and live my life with just POTS. Not worry about the potential consequences of my actions, and just say, “well, if I go too far with POTS and faint, I faint. If I end up in the ER, so be it.” But once you start having anxiety, you can’t just magically switch it off. Especially health-related anxiety. If you have a chronic and incurable illness like POTS, there is no way to forget it’s existence and suddenly take away the anxiety-provoking factor. That factor is an inherent part of me now and it’s going to be there potentially forever.

So where is the “true me” side? Where do I have a space to be myself, pursue my own interests and dreams, and not be bogged down by the energy-sapping neediness of anxiety and POTS? Honestly, I am still trying to figure that out. Anyone with an invisible illness is an amazing actor: we can fake it better than most anyone else. But if I have to conceal my symptoms to feel somewhat normal, only to have them brew underneath the surface to blow up in my face later each time I want to be just me, then I am not highly encouraged to bring that part of me out.

I know I am not the only one facing these struggles: overcoming hidden barriers are the lived experience for anyone with an invisible illness. Just because the public doesn’t see what we feel on a daily basis doesn’t mean our challenges should be any less legitimate. So here is my advice for the rest of society: if someone comes off as cold, or as ignoring you; if they bail from a party because they are anxious or tired; or if they simply disappear off the grid for a bit, don’t judge them. Sometimes our illnesses prevent us from expressing our true selves and we just need some time to regroup, recharge, and return again to the fight to live our lives how we wish to, not just how our illnesses dictate we do.

Heidi is a 24 year old wannabe grandma who enjoys hours of puzzling, cardigans, colorful tights, and sweet potatoes. She was recently diagnosed with POTS, but has been living with a chronic illness for most of her life. She writes to help her redefine who she is as Heidi the chronically ill and aspires to become an autonomic specialist in the future.