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16 Photos That Show What POTS Really Looks Like

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Postural orthostatic tachycardia syndrome (POTS) is often touted as an “invisible” condition. And it’s true that the symptoms don’t often manifest outwardly in ways “healthy” people understand. POTS is a type of dysautonomia, or a dysfunction of the autonomic nervous system which includes functions like heart rate, blood pressure, digestion and temperature. People with POTS experience an increase in heart rate upon standing. Some also experience a drop in blood pressure upon standing. Other symptoms can be blood pooling in the legs, lightheadedness, exercise intolerance, fainting, and coldness in the extremities.

Having all these symptoms, without the ability for your friends and loved ones to really see when you’re struggling, can be tough to deal with. “Having a chronic disease like POTS is devastating and since many of your friends, neighbors, relatives, and teachers don’t understand the illness, you may feel alone and misunderstood,” Dr. Marc Le Gras, POTS expert, wrote in a blog.

So what can we do? One thing that may help is to raise awareness of what POTS “really” looks like — if you were to pull back the curtain on a POTS warrior’s life, what would you find? Perhaps this way, we can help others understand the reality of POTS, both to support others with the condition and encourage loved ones to better support the POTS warriors in their lives. So we asked our Mighty community to share a photo that shows what POTS really looks like.

Here’s what our Mighty community shared with us:

1. “Blood pooling, lightheadedness and pre-syncope. I had to lie down with my legs up against the wall.” — Aili S.

woman lying on her back with feet up against the wall

2. “These are my ankle braces to help me keep my balance when I feel like falling over. You can see my horrible circulation in my toes and how freezing cold I am all the time. I hide this under thick socks, jeans… but can’t hide my cane and wheelchair!” — Courtney F.

feet wearing ankle braces

3.This is me at Disneyland. Because of my POTS I can’t stand for long periods of time (because of my heart rate being over 120 when standing) or even walk very far (heart rate jumps to over 150, and makes me winded). So when I try to enjoy a ‘good’ day at a fun place, it usually involves a wheelchair and a strategy because I get so tired just from being up. Usually it also involves lots of trips back to the hotel for naps throughout the day…” — Amanda E.

woman sitting in wheelchair at disneyland

4. “Frequent hospital admissions because my HR is 160 BPM or more regularly so I have to continuously have fluids every few weeks. But I have to educate the hospital staff. Anxiety from lack of awareness of hospital staff is common. Being in a bed for hours and hours because doctors don’t believe it’s physical. Exhaustion. Chest pain. It’s hard to breathe. Lightheaded. Constantly wondering if I’m going to faint. Low blood pressure making it almost impossible for me to convince them it’s physical because symptoms mimic panic. It takes so much convincing for them to check just my vitals and then maybe I’ll get fluids if I’m lucky. This is Australia.” — Astrid M.

hand with iv in hospital

5. “POTS looks like having a blood pressure monitor on the desk in my college dorm room.” — Caitlin W.

blood pressure monitor

6. “Had caught a virus that was going around. I’m immune suppressed so they hit me harder. I was finally getting over it and feeling a little better. I’m laying on the couch watching TV when my heart started feeling weird, then it felt like it stopped. Severe chest pain like I hadn’t felt before, then I lost consciousness. Next thing I’m back and my heart rate is soaring. Taken to ER. Due to getting sick my heart paused for a few seconds, then jump straight into tachycardia. Took almost the whole night to bring it down. Scariest thing to think your heart’s stopping. The good thing that came from it is the ER doctor never took my POTS diagnosis seriously until then. He was like ‘something IS wrong!’” — Dawnique S.

woman wearing surgical mask in hospital bed

7. “My heart rate got too high and I was about to pass out. I had to lay on the ground right where I was. Whenever this happens, my dog comes and sits right at my side until I can get up.” — Sarah B.

woman lying down with small dog sitting next to her

8. “Constant ER visits due to passing out and heart rate in the 200s and occasionally spraining something from falling.” — Yesenia R.

arm with iv in hospital

9. “Feeling so dizzy and sick that he needed to lie down in a bus shelter just to make it the last five minutes of our journey. We are currently saving to go [to private insurance] as his pediatrician doesn’t believe children can have POTS despite his symptoms fitting the diagnosis.” — Alesha B.

young boy lying on bench covered in coat

10. “My heart rate was around 200 when I stand up, I couldn’t breath and I was passing out. The doctor from the clinic had to call an ambulance to bring me to the ER because in the clinic they couldn’t reduce my heart rate.” — Magdalena N.

four photos of woman in hospital, wearing breathing mask, with iv in arm

11. “I got dizzy/overheated in the middle of Disney World and had to sit on the ground because there wasn’t a bench close enough that was available. My friend snapped a photo to make the situation look more ‘normal.’” — Madeline K.

woman sitting on ground at disney world

12. “My heart rate was 160, I had felt a little dizzy but I truly didn’t notice how high my heart rate was until I got the alert from my service dog. I checked my pulse myself and on a finger pulse taker thingy, and sure enough it was 160ish for both. So I sat down. This was around when my heart rate finally calmed down, but my best friend snapped a picture of the moment (which I’m thankful for because it shows what my days sometimes look like). But being dizzy and almost passing out are two very natural things in my life now.” — Savannah T.

woman sitting on floor with service dog in a big room with rows of chairs

13.Over eight hours ‘exercise’ I only walked around, did my job and light house work.” — Deanna G.

screenshot of heart rate app showing very high heart rate

14. “POTS looks like finding ways to lower your heart rate below 160 while laying down so that the ER is not added to the vacation stops, and having your sisters and cousin remind you to drink your Gatorade every five minutes.” — Anna C.

woman lying on bed with feet against the wall in a hotel room

15. “On the surface you’re ‘normal’ and healthy, people look at you funny when you say you couldn’t get out of bed, or you can’t eat because your stomach hurts. It’s exhausting sometimes just to smile, let alone exist, but you do it anyway because otherwise people get uncomfortable because being sick is something I should apparently be ashamed of.” — Alea M.

woman closing her eyes and smiling

16. “Me right now receiving my infusion for my POTS. I currently have a cold and my resting heart rate has been around 100. When not laying in bed today, I’ve been using my wheelchair. This is the reality of POTS.” — Bree S.

woman lying in bed with iv in hand

It’s so easy to feel alone when you live with POTS. But know that you are so strong for getting through each day, and there are others out there who know what you’re going through. Post a Thought or Question on The Mighty to connect with others in the POTS community.

Originally published: December 5, 2018
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