When I Stopped Trying to Be 'Normal' While Living With POTS

I live in the gray area that divides being “functionally sick” from being “sick – sick,” or too sick to live a semi-normal life. I’m not quite sick enough to be in bed all of the time, but I am too sick to be forcing myself to do the things I have been doing, like hold down an almost full-time job. I live in a confusing space, a space in which I appear to be healthy, as I do my best to do all of the “things” that healthy people do, but I feel the absolute opposite. I have a tendency to push myself past the breaking point just to have a somewhat “normal” life. But is it working? Not entirely. I’m constantly exhausted, constantly drained, and absolutely depleted of energy.

On the outside, I look like any healthy 26-year-old. I carefully apply my makeup every morning. I work an almost full-time job. I go out with my friends (sometimes). I’m in grad school (online). My Facebook and Instagram both show my highlight reel, which makes me appear healthy (when really they show the moments I feel a little bit OK, or moments that I’ve forced myself to smile for a camera). I don’t pass out like I used to.

Sure, my feet turn purple from blood pooling and a few times a day my chest and face flush a bright pink color, but otherwise, no one can tell I’m sick from just looking at me. And because they don’t know, I tend to hide the truth. I push myself so hard so that I can meet my own expectations, or the expectations that I would have had for myself if I weren’t sick.

I push myself to be the person that others expect me to be as well. I try not to cancel plans. I try to laugh even when I’m exhausted. I try to be present, even when I’m fading in a cloud of brain fog. And on the days in which I can barely stand up, I still try to show up, even if it means downing medication, a Gatorade, and a cup of coffee. I try, and I try, and I try to be “normal.” I try to live the life I had expected to have at this point.

To most people, I look like a healthy girl who holds a steady job. A girl who goes to concerts and goes out some weekends and even drinks. A girl who looks like she’s living a perfectly normal life. And I do do those things. But I always, without fail, pay the price. I have a long recovery after concerts. I crash when I come home from work, and can sometimes barely make it up the stairs. I am dizzy and fatigued the entire next day if I go out. I have to lie down after I make a one-hour long Target run.

But no one else sees this. I don’t post photos of me lying down on the floor struggling to breathe after a long day. I don’t tell others that I actually feel like I was hit by a bus the day after I went out with them. They just see the occasional bursts of energy or the smile on my face. They think that a smile means I am feeling OK. They think a smile means I’m healthy. But a smile just means that I am doing my best.

I’m doing my best to survive the discomfort. My heart races. My head hurts. I get dizzy. Somedays I feel as though I have the flu. A lot of the time, I feel like I’m walking through heavy water. My legs sometimes feel like they could give out from exhaustion. And many days, I feel like I could pass out or just fall asleep at any moment. Sometimes I throw up from nausea that hits out of nowhere. Sometimes my body stays awake for 36 hours in a row, for no apparent reason. I have to ask for help when carrying my groceries. I often ask my friends for rides because I don’t want to drive at night when the lights will make me dizzy. I can’t hang a shower curtain up myself because it’s too hard to keep my arms above my head. I may not look sick, but I am definitely very sick. No matter how hard I try to cover how awful I feel at times, the reality is, I am still chronically ill. I still live in a chronically ill body.

So why do I try so hard to be “normal?” Why do I push myself so much when I feel like crap 70-80 percent of the time?

Lately, this question has been on my mind a lot. I very recently had to make the change to working remotely. I had to give up parts of a job I absolutely loved because I couldn’t do these parts anymore. And with this change came an awakening. I’ve decided that maybe it’s time to let my illness become part of my life. I’ve been pushing it away and trying to hide it for five years now because I am so stuck on the idea of “normalcy.” I keep holding myself to (ridiculously) high expectations because I feel like I “should” be able to do all of the things I would do if I were healthy. I keep worrying that giving in to my illness will mean that I am weak and I’m not trying hard enough.

I still haven’t fully admitted that I’m not the energizer bunny I was before I became sick. I haven’t said goodbye to the healthy girl I used to be. I haven’t grieved the loss of the old me, and I think the fact that I haven’t done so is holding me back. I think it’s hurting me more than I expected. With this realization, I think it’s time that I learn how to accept this “new” sick version of me.  I don’t need my illness to be my sole identity, but I do need to come to terms that my life is different than I had expected it to be. I’ve been so afraid to face this new way of life that I’ve hidden. I haven’t let others see the real me, the real person I am today. And it has played a toll on my physical health as well as my mental health.

Maybe my best life isn’t going to look like the lives of my healthy friends. Maybe it’s not going to be as adventurous or spontaneous. Maybe it will involve a lot more doctors appointments, a lot more lab work appointments, and a lot more pills. Maybe it will involve a part-time job rather than full-time. Maybe I won’t be able to go camping and hiking and white water rafting with my best friends. Maybe I won’t be able to go to happy hour after work. Maybe I won’t be able to sit out by the pool in the summer when it’s too hot out. Maybe I’ll spend a little more time than others sitting on my couch. Maybe I’ll be a little bit more lonely.  Maybe I’ll miss out on a lot. Maybe I’ll have to make “No” a bigger part of my vocabulary. And maybe I need to finally accept this.

Because you know what? Maybe my sick life will still be good, just in a different way. Maybe I’ll value relationships more and become a more compassionate human being. Maybe I’ll have a better understanding of joy. Maybe I’ll learn how to love myself, even if takes s while. And maybe, as I make my way through this battle, I’ll become strong as hell.

After five years of fighting this illness, five years of frustration and fatigue, five years of being emotionally drained, I know that it is finally time to be on my body’s side. It’s finally time to say hello to the new me, the sick me, and to invite her into my life with warmth and compassion.