What Photos Won't Show You About My Life With POTS

Pictures often highlight the parts of our lives we want the world to see. However, pictures do not show internal symptoms like headaches, dizziness, fatigue or the struggle to stand up or stay awake. I have POTS (postural orthostatic tachycardia syndrome) and never know how I will feel one day to the next. The symptoms I just mentioned are ones I experience most days with this condition. Based on Facebook or Instagram photos, people often assume I am fine, healthy and don’t suffer from a debilitating illness. Think again.

I’m not saying I never get to go out here and there (because I do), but it’s not always a walk in the park for me. It requires much preparation and energy to make it happen.

Living with POTS and maintaining friendships has proved to be its own challenge lately. If friends see a photo of me out and about, I imagine they’re thinking, “Well if she’s able to do that, then why didn’t she go to this?” or “Why don’t I ever see her? Maybe she doesn’t care.” Simply put, I can’t do it all. I cannot overdo or I will fall apart physically and then will not be able to do anything. Overdoing in my case may be seeing friends two nights in a row after work. Other times, overdoing for me is showering, cooking and doing laundry in the same day.

Traveling with chronic illness isn’t the same as traveling as a healthy person. Therefore, it’s harder for me to see friends further away as travel can be difficult for me. I live up in the northern suburbs and even getting to downtown Chicago is a huge effort physically for me. I don’t want to get stuck somewhere, feeling ill and unable to get myself home. I have to prioritize and then pick and choose. Sometimes I have to cancel things last minute because my symptoms are flaring up so bad I can’t drive or stand up without feeling completely miserable. It makes things very tough to plan to say the least and this is partially why I don’t make as many plans with friends these days. I don’t like letting people down and if I break plans, I feel I am.

Things I always have to consider when going out with friends or family:

1. Will there be adequate seating? If not, it’s a no go. Outdoor concerts with no chairs or anything are not an option for me anymore because if I stand for longer than 10 minutes at a time, my body fails to pump enough oxygen and blood to my brain, I get dizzy, my heart rate jumps up, my blood pressure drops and sometimes, I faint. I have to be careful attending cocktail parties where there’s limited seating. If I don’t stake my claim on a seat early, things won’t end well for me. Last summer, I found myself camping out in a bathroom stall because it was the only seating I could find and I was about to faint. Trust me, I’d rather spend my time with friends than in the restroom.

2. If I’m going to be out past 9:30-10 p.m., I need to make sure I have a possible driver. I’m not always able to drive myself home in the evenings. This is usually because the brain fog, dizziness, fatigue and evening headaches become too disorienting to get behind a wheel. I don’t like the idea of operating machinery that puts my life and others’ lives at stake.

3. I need to make sure to prepare and pack snacks, in particular ones with salt. I never know when my blood sugar or blood pressure will be running lower than normal and I’ll need a pick me up.

4. Water. I never leave the house without my 20-oz. glass refillable water bottle. When you need minimum three liters a day, you can’t go unarmed.

5. It’s important that I have extra medicine on hand. In the off chance I get stranded somewhere, being left without medicine causes big problems because I quickly become a fall/faint risk, not to mention, I’ll be feeling miserable.

On top of trying to maintain a social life while dealing with symptoms of POTS, additional health stressors have been keeping me busy. My dad is battling brain cancer and I like to spend as much time with him as possible. I’m not willing to sacrifice that time. On top of that, my cat is on an anti-seizure medication every eight hours so he’s basically like a built-in curfew throughout the day and night. I realize everyone’s got stuff going on, but right now, my plate is extra full and I don’t feel well most days. I need to have rest days throughout the week to avoid exacerbating my symptoms. So, like I said earlier, I have to pick and choose and prioritize because I just can’t do it all.

Nonetheless, I aim to focus on what I can do rather than what I can’t. It may not seem like much to everyone, but it’s all I can do right now and I’ve had to learn that that’s OK.