What Life With POTS Looks Like After You've Left the Doctor's Office


We all know the symptoms of postural orthostatic tachycardia syndrome (POTS): tachycardia, dizzy spells, nausea, fatigue and, in some cases, blackouts. Living with POTS means juggling a range of symptoms, so what is it really like to live with POTS after you’ve left the doctor’s office?

1. It means forgetting what you needed from the shop because you only went to get three things, so you thought you didn’t need to make a list.

2. It’s not being able to work due to fluctuating symptoms and it means explaining to people over and over again why you don’t have a job.

3. It means having nightmares every night and waking up feeling like you haven’t slept at all, even though you’ve slept for 12 hours.

4. It means planning every activity around your symptoms, which is exhausting in itself.

5. It means taking medications to treat the side effects of other medications.

6. It means avoiding foods and drinks that can worsen your symptoms, such as alcohol, caffeine and sugar.

7. As a young woman, it means considering when and if you want to start a family.

8. It’s going out with a full face of make-up because you don’t want people to see how washed out and tired you look.

9. It’s wondering whether you believe your doctor when he says you’ll be better by the time you’re 30.

cupcake with number '30' on it

Although POTS is not a life-threatening condition, it is definitely a life-changing condition.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via akinbostanci.

TOPICS
, Contributor list
JOIN THE CONVERSATION

Related to Postural Orthostatic Tachycardia Syndrome

Watercolor painting of a beautiful woman face and flying hummingbirds

The Hummingbird Caged Within My Heart

A hummingbird is living inside my chest. She has built a nest inside my rib cage. Some days she is content to flit around at home, and I barely register she’s there, flying. She’s always flying it seems. Once, when I was little, I heard that hummingbirds stay in flight even while they are asleep. [...]
drawing of woman with long, waving hair

What Is POTS, Really?

Today I was diagnosed with postural orthostatic tachycardia syndrome. The number one question people ask me is: What is POTS? That’s a complex answer; here is my definition. For me, a POTS diagnosis has been a huge answer at the end of a dark tunnel, but it has also opened a Pandora’s box I didn’t [...]
Illustration of a young girl in a cap. She smiles, her eyes closed.

To the People Supporting Me, From the Girl With the Chronic Illness

Mom, You don’t have to be sorry. This isn’t your fault. Finally having a diagnosis is the best thing ever, but there’s no reason to say “sorry.” I’ve felt this way for months, years, days. Nothing has changed. The only thing different is, I have a diagnosis. It’s something to be happy about. Yes, I [...]
Young woman, water colored, hands up in the air.

Why I Choose to Celebrate the Anniversary of the Day I Became Sick

Two years ago today, I got sick – but today is a celebration. Let me explain why. At first, I just wanted to figure out what was wrong with me. Then, I just wanted to get better. A lot of days I just want to be off meds and be “normal.” I also wanted to [...]