Living with an Invisible Disability

A bout with COVID morphed into POTS for Zach Mines. Postural Orthostatic Tachycardia Syndrome is a condition that causes a sudden spike in heart rate upon a change in posture; patients' hearts behave as if simple daily tasks are intense cardio workouts, leading to exhaustion and other complications. Zach walks us through the day-to-day challenges of managing his condition along with the social stigma attached to invisible disabilities. He leaves us with a few lessons he's learned along the way. 

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In June of 2023, my body stopped working. As someone with chronic fatigue syndrome, I was used to never having the energy to do much of anything, but this was different. It was like gravity was pressing down on me tenfold. 

My brain would shut down and I’d struggle to find basic words when speaking. For spans of days or even weeks, I would only be able to get out of bed to do the basic tasks needed to exist. My world was falling apart and what was worse, no one else could grasp just how bad it was. 

On the surface, I was the same Zach. And with how new it was, I didn’t know exactly how to characterize it, especially because I and many doctors had no clue what was wrong with me. 

Thankfully, with the help of my psychiatrist, we were able to pin down that what ailed me was something called POTS. We’re now seeing a rapid rise in cases due to COVID-19, which has led me and many others to have to come to terms with our new ways of being and living in a world that isn’t made for those who are struggling like us.

Life with POTS

POTS stands for postural orthostatic tachycardia syndrome. Postural means one's body position, orthostatic refers to the act of standing up, tachycardia means a heart rate over 100 beats per minute, and syndrome means a combination of symptoms. All of this comes together to mean that when someone with POTS stands up, their heart rate jumps and the collection of symptoms they experience kicks in. 

No one person will have the same confluence of symptoms and how extreme each one is varies as well. For me, it’s somewhere in the middle. My resting heart rate is usually in the 90s, but anything remotely strenuous–walking to the subway, cleaning my apartment, even standing while showering, or general heat and humidity–will easily put it into the 100+ range. 

That high heart rate makes my body feel like it’s doing cardio every hour of the day. I’m constantly exhausted, being able to fall asleep at pretty much any hour of the day so long as I’m lying down. I’m also exhausted physically, where walking always feels like trudging through waist-deep mud. On a good day, my brain fog will only leave me in a zombie-like state for three hours, struggling to string together words into basic sentences. 

Thankfully I have yet to faint, but my vision will occasionally black out for a second or two and I’ll feel dizzy alongside that lapse and brace myself on whatever is nearby before going on with my day. 

When my POTS is at its worst, I feel an intense burning sensation throughout my body that will last for weeks at a time, spreading out from my head to each of my limbs until my entire being feels like it’s on fire.

When you’re able-bodied, much like I was for most of my life, you might look at someone in a wheelchair and think about how your life would be affected by the lack of function of your legs. To structure your life around not being able to reach high-up shelves or take subway stops that don’t have an elevator, or the time it takes to do your morning routine of showering and dressing yourself, or any number of suddenly impossibly difficult tasks. 

Before being in my current state, I was able to vaguely put myself in their shoes without actually having to contemplate just how taxing a disability can be on every facet of your life. Now that I am disabled, it has become clear to me that this world is not built for those like me. In fact, sometimes it feels like it’s been built in ways to make my life more difficult than necessary.

New York City walk-ups are the bane of my existence, each step more taxing than the last, and opting to reach the top commits me to a week of wasting away in bed. Public transit during the warmer months is blisteringly hot and swampy, which necessitates a couple of days in bed to compensate. 

A full-time job requires a functional brain and for me to stay awake the whole day, so the part-time work that I can find, like writing this article, is done from my bed to limit the amount of energy I expend. I’m in bed a lot… 

Every second I’m standing, be it in the shower, on a packed subway, waiting in line, or wherever, my strength is being sapped. And I only have so much of it each day. If I surpass that threshold, I’ll be paying for it in the coming days or weeks, so each action has to be carefully mapped out. 

I’ll tell myself things like I haven’t seen my loved ones in some time, but they’re an hour away and I have an important doctor’s appointment tomorrow, guess I’ll have to wait another week until they’re free again. 

Or I want to get outside, but this whole week is going to be 80° and humid, so I’ll have to stay in if I want to have the strength to cook for myself. 

Or I need to exercise, so I have to have at least two days of no activity immediately following it to ensure I can manage to clean my cats’ litter each day. 

If I don’t do this, or try and press my luck, I could end up face down in bed, unmoving except for feeding my cats and myself. 

(Not) Seeing is (not) believing

Now, unlike the wheelchair example, for the most part, people are generally unable to tell that something is off with those who have POTS. The number of times I’ve heard the line “Well you look great!” after explaining my situation to people is uncountable. 

If I never told anyone I was struggling, people for the most part wouldn’t know. This is in some ways great: Invisible disabilities, the title used for health cases like mine, make it easier to exist without unwanted attention. 

I can hide my POTS if I don’t want anyone to perceive me as being different and, unlike on a recent trip I took with a friend where he pushed me in a wheelchair the entire time, I don’t have to worry about the tension that comes with being stared at by everyone around me. Plus with all of the sitting and staying home I’m doing, I get to spend quality time with my two cats whom I love dearly. But it also has major downsides which, to me, severely outweigh the benefits.

For those of us with an invisible disability, the ability to communicate what we need and how we are ailing is entirely conveyed through our words. Unlike a broken leg which can show up on an x-ray, there is no obvious sign of physical damage that a POTS patient can point to. 

And since many of us struggle to express what we’re experiencing in ways that the people around us can understand, our disabilities are often minimized. 

We can say we’re too tired or weak or that thoughts aren’t forming, but the depth of that understanding is limited to the shared experiences of the listeners. I regularly hear people commiserate about how they get tired or how they get the occasional brain fart and so they get what I am experiencing. 

Fatigue and wirecrossing are, after all, just a part of the human condition. 

The issue is that our ‘tired’ and their ‘tired’ aren’t the same. Tiredness for those with POTS is debilitating to the point where life becomes a challenge. 

I am fortunate enough that some people, both those who are in the field of medicine as well as friends and family, hear what I am saying, respect that they don’t know enough to make a judgment, and err on the side of treating my condition with the same level of concern that they would treat any other disabled individual. But for many others, any attempt to express falls on deaf ears. I will regularly hear, sometimes in direct ways, sometimes subtly, that I’m just being lazy by not working or that because we look fine it’s clear that nothing is wrong with us. 

These same people wouldn’t tell a man in a wheelchair that he’s just not trying hard enough to get up the stairs because they can envision the way that a broken leg or paralysis would make that an impossible task. 

But since POTS isn’t well understood, there’s not a clear reason to them why we can’t walk or think or work beyond saying that we can’t. It isn’t until a doctor explains that the symptoms are real for those who are uncertain to take them seriously.

And then if you add on the fact that over 85% of POTS patients are women, a group that continuously is ignored or gaslit by those in the medical field, or that a whopping 70% of claims for Disability are denied, you end up with a large number of people going untreated and unsupported when they are physically unable to care for themselves. 

This is especially insidious because, after enough times of hearing that if we just try harder to engage in society, that suddenly we will be able to do so, some of us start to believe it. 

We will start to believe that we are just as lazy or stubborn as they’re saying we are. This leads to a lack of self-esteem, which makes advocating for yourself in times of need more difficult.  An increase in unneeded stress is particularly problematic due to the bodies of those with POTS being more sensitive to stress hormones. 

In the confusion, many will try to push themselves beyond what is healthy in an effort to live up to expectations. All of this combined results in a worsening of symptoms.

Treatments and lessons

The causes of POTS are unknown and there currently aren’t any effective cures.  Research has been minimal, but now, after a growing number of POTS cases resulting from long COVID, there is hope that the research will pick up. 

Until then, there are treatments that can make the experience somewhat easier to manage. Regular exercise done meticulously so as to not overwhelm our fatigue-prone bodies can help boost stamina. A high sodium and high fluid diet is a necessity to raise blood volume since blood pooling is a recurring problem for those with POTS. Similarly, compression socks and pants are used to prevent blood pooling. 

There are various medications—corticosteroids to help retain extra salt, beta-blockers to lower the heart rate, vasoconstrictors to increase blood pressure, stimulants to raise energy, and so many more—that can make the symptoms less burdensome. 

But each patient is different and one medication or lifestyle change that can vastly improve the quality of life of a POTS patient can do nothing or even make symptoms worse/tack on unpleasant side effects for others. 

And trying one medication after another (sometimes it feels like the doctors are just guessing) can be depressing. 

I’ve personally yet to find the medication that makes life manageable for me, but I’m hopeful that, as I’m fortunate enough to have good insurance and a support system, I will one day find one that allows me to live like everyone else does.

It is an inescapable fact that our society is primarily built for the able-bodied and it is difficult for the healthy to fathom the challenges daily life throws at the chronically unwell. 

Many with disabilities suffer extra strife due to limited access to disability services, health insurance complications, or plain discrimination. And the reality of invisible disabilities means anyone around you could be struggling with these issues unbeknownst to you.

Helping the reader develop a greater understanding and empathy for life with an invisible disability like POTS is one of my primary hopes for this article. If you happen to be someone who is experiencing symptoms associated with POTS like debilitating fatigue, weakness, fainting, heat sensitivity, etc., and don’t know what is wrong with you, hopefully, this article will be the first step in your path to treatment and better self-understanding. 

And if you live knowingly with POTS, I hope this article makes you feel seen.

I’d like for this essay to do more than simple awareness-building though. As I reflect on my experience with POTS and try to derive broader lessons about life and how to live it as well as I can manage, a few things come to mind. 

To those who are able-bodied, don’t take it for granted. 

Do as much as you can while you are able to. Cherish it with every fiber of your being because once it is gone, you will certainly wish you did more with it. 

And if you have people in your life who aren’t able-bodied, please be reasonable with them. They are going through a hard time and without that support, they won’t have the means of seeing it through. People like me rely on people like you. 

To those struggling, social and emotional support is critical for any healing process.

Social stigma against those with disabilities is real and crushing, so latch on to anyone in your life who will help you or love you unconditionally. And please be gentle with yourself. I know how easy it is to fall into the headspace that you’re burdensome or a failure, but the people in your life who care for you won’t see it that way. 

You are worthy of loving and being loved. And please don’t be discouraged. It may seem like there’s no hope, but for all you know, that next treatment may be the life-changing one, or maybe one that makes life marginally easier. Keep going because chances are you’ll find something that helps, even if just a little. 

And to everybody, I just want to say we need more kindness and empathy in this world. If you take a little more time to listen to what people are saying, we will all be better off because of it. 

Zach Mines is a freelance web developer and writer currently residing in Brooklyn. They live with their two cats, Calvin and Charlotte.

All opinions expressed here are solely of the author and do not reflect the views of the author’s employer.