One super amazing thing in our lives is MyTeam, which is a confidential, awesome support group for frum girls with chronic illnesses

1.

POTS is a form of dysautonomia, which is the umbrella diagnosis for conditions affecting the autonomic nervous system (ANS). Your ANS controls your body’s involuntary functions such as heart rate, temperature regulation, digestion, etc. Because of this, POTS literally affects every aspect of our lives, including eating, showering, sleeping, standing and many other things as well. Our symptoms range from dizziness and nausea to muscle spasms and fainting.

2.

POTS stands for Postural Orthostatic Tachycardia Syndrome. It means an abnormal increase of heart rate when you go from a resting position to sitting up or standing. POTS affects each person differently. Some people need mobility aids (such as canes, walkers, or wheelchairs) to walk, others walk normally. Very often POTS is an invisible illness, meaning that those with POTS often suffer in silence, with some of our friends having no idea about our condition! POTS affects between one and three million people in the U.S, most being adolescent girls and women.

3.

There is actually no cure for POTS. Drinking (a lot!) of water, exercise (usually specific ones for POTS patients), consuming a large amount of salt, wearing compression stockings, and some medications, can help alleviate symptoms. There are many conditions that are comorbid (happen simultaneously) with POTS, including EDS (a disorder that affects skin, joints, and blood vessels), various stomach problems, severe allergic reactions, asthma, chronic migraines, and many more. Most people with POTS will not have all of these conditions but can have a few of them. Because of this, POTS patients spend lots of time at various doctors.

4.

One super amazing thing in our lives is MyTeam, which is a confidential, awesome support group for frum girls with chronic illnesses — not just for those with POTS, but also Crohn’s, diabetes, juvenile arthritis, and more. In fact, we (the girls who submitted this!) met each other through MyTeam. It’s an amazing organization!

5.

Lots of teenagers (or even adults) have never heard of POTS. If you do know someone with POTS, please do keep inviting us to social events, and call or even ask to visit if we’re absent a lot. Doing these types of things help us feel in the loop as well as seen and heard when we aren’t able to join or respond, and they mean the world to us, especially when we are going through a flare-up or hard time. Please don’t ask a lot of questions, recommend magic cures (there aren’t any!) or comment on things you don’t know. We don’t want to be a chesed case — we’re regular, normal girls, just with this additional challenge.

Thank you to Anonymous 1 & Anonymous 2, friends from MyTeam, for this contribution!

(Originally featured in Teen Pages, Issue 941)