What It’s Like to Live With an Invisible Illness

Photo: Courtesy of Rachael Green

Rachael Green was just a college student when her life was transformed by the sudden appearance of an "invisible illness" known as postural orthostatic tachycardia syndrome, or POTS. According to researchers, this under-studied disorder is an autonomic disturbance characterized by clinical symptoms such as lightheadedness, fatigue, sweating, tremors, anxiety, heart palpitation, exercise intolerance, and fainting or near-fainting upon moving from a prone to upright position. POTS is estimated to affect a total of 1 million to 3 million Americans, primarily women under the age of 35. It's incurable.

Here, the 22-year-old shares the story of her diagnosis, what it's like to live with a chronic illness at such a young age, and how she stays positive despite the challenges. 

Before I was diagnosed with POTS, I was an avid rock climber who was planning to travel the world to climb. That was my passion.

Then, one week almost two years ago, I started to feel a little weird while on a climb. I was shaky and lightheaded, and I started to black out. I thought maybe I was getting sick, but I continued on, and didn't think much of it. Not long after, I went to a climbing competition and as I was warming up, I completely blacked out. After that, I didn’t get better.

What is POTS
Photo: Courtesy of Rachael Green

When trying to stand or walk, I'd experience extreme dizziness and tachycardia (or rapid heart rate). I wasn't bed-bound, but I was house-bound—little actions like trying to do laundry or cook a meal would make me lightheaded and I'd have to lie down. I missed weeks of class and did most of my schoolwork from bed. Doctors—I saw several—couldn’t find out what was wrong. They thought I had mononucleosis, but I didn’t really have the right symptoms.

At that time, I had a friend with POTS—which is a really weird coincidence because it’s not the most common disease. Out of curiosity, I looked it up and was struck by how similar its description was to what I was experiencing. To explore the possibility that it was the culprit behind my symptoms, I found a doctor in my area who specializes in POTS. He diagnosed me right away using something called a tilt table test, where they strap you to a motorized table and measure your heart rate and blood pressure as you're slowly tilted to a vertical position. I was pretty lucky to get my diagnosis just three or four months after I first started experiencing symptoms, because for some people it takes years. A lot of doctors don’t know about POTS so they don't test for it—my family doc says I'm the only patient he's ever had with the disorder.

Basically, what's happening with POTS is that your body isn't regulating your heart rate and your blood pressure correctly. So when you stand up, your heart will just start racing for no reason. This often results in dizziness and even fainting. POTS can also cause headaches, nausea, and all sorts of vague and disjointed symptoms, which is another reason it can be pretty tough to diagnose. Frequently, the condition's onset occurs after a sickness like mono or a big surgery, but doctors don’t really know how it happens or why it starts.

I seem like a normal 22-year-old, so sometimes I get funny looks for my handicap placard—but oftentimes I can’t make it through the grocery store without having to take a break.

Recently, however, I was also diagnosed with intracranial hypertension, which is essentially high pressure in your brain. It's even more rare than POTS. Since it’s a neurological condition, my doctors are saying it could be causing my POTS, but until it gets treated, they won’t really know. If the intracranial hypertension is what's causing my POTS, the hope is that treating it will get rid of my POTS symptoms. But generally speaking, there is no cure for POTS. The only thing you can do is try to lessen symptoms by staying hydrated and adding a lot of salt to your diet to keep your blood pressure up. A lot of people with POTS also take beta blockers to keep their heart rate down.

Because it's an invisible disorder—in other words, I don't appear sick—life with POTS can be difficult to navigate. I seem like a normal 22-year-old, so sometimes I get funny looks for my handicap placard—but oftentimes I can’t make it through the grocery store without having to take a break. I'm fortunate to be able to do my job remotely through an arrangement with my employer, but not everyone with POTS has the same option. This can make continuing to work a challenge.

By far the hardest thing for me, though, has been not being able to be active. Before I got sick, I was going on climbing trips every weekend. Now, I’m too sick, and that’s been really difficult. It's been difficult (and boring!) to go from a travel-heavy lifestyle to being on my couch or in my bed all the time, and it’s hard to watch all my friends on social media doing all the things I want to do but can't. I struggle with feeling lonely, and I don't bring it up a lot because it feels awkward—before POTS I was known as 'Rachael-the-climber-girl who's always going on these cool adventures' and now suddenly I’m in my bed every day. I’ve struggled with a level of depression, and I definitely feel upset a lot more often than I did before getting sick.

Luckily, I have a good support system. I met my husband, who's also a climber, two months before I got sick with POTS. He's stuck by me throughout the whole thing, so I got lucky in that I never had to face the difficulty of telling a new potential partner about my illness. Still, chronic sickness can be hard on any relationship, and I feel fortunate to have found someone who is willing to take care of me and love me anyway.

Right now, I'm optimistic about my illness. I think I’m heading in a good direction with some of the treatments I have coming up, and I’m hoping that in the future, however far off it might be, I’ll be able to return to an active lifestyle again. Keeping that hope is critical in order to stay positive.

Health is something that's easy to take for granted...until you have serious health problems. If and when I get better, I will never see life the way I did before my illness. In the meantime, I hope I can help other people going through similar things by sharing my experiences on my blog, Gone to POTS. If there's one piece of advice I can give specifically to those suffering with POTS or other chronic illnesses, it's to stay proactive. If you feel there’s something underlying your POTS, like I did, keep fighting for more answers. Do your own research. That’s how I found my intracranial hypertension—I had to search my symptoms and ask to be tested for certain conditions. Doctors don’t always have the time to really dive into these rare cases, so you have to be your own best advocate.

No one knows what causes POTS, but inflammation has been generally linked to a host of other diseases. Find out how mixing baking soda into your water can help reduce your risk, plus get the 411 on anti-inflammatory foods

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