POTS May Not Be Life-Threatening, but It Is Definitely Life-Changing

I’ve spent a ton of time thinking about how to explain my “invisible illness” and how I live with it day after day. For starters, I was diagnosed with POTS this month last year. But I look completely like a “normal” teenage girl. Just because you can’t see my symptoms doesn’t mean they’re not there. They will always be there for me.

Many of you may have no clue what POTS is and that’s OK. It’s a very rare syndrome; it’s also a chronic illness. POTS stands for postural orthostatic tachycardia syndrome. It’s one of many illnesses that are in the “dysautonomia” category. Dysautonomia includes all the illnesses dealing with your autonomic nervous system – and basically your nervous system is your “control system” for your body. Which means if you have one of the illnesses, it can affect pretty much your entire body.

POTS is mostly known for causing an abnormal heart rate, heart palpitations, dizziness upon standing and the inability to tolerate standing. But that’s not it; there are multiple symptoms.

Have you ever had a moment where you go to tell someone something but as you go to do it, you completely forget everything? That’s what it’s like dealing with POTS. You can tell me the same thing over and over, but I won’t remember it, at all. I try, believe me.

Living with POTS involves standing up and waiting five to 10 seconds for the dizziness to go away. Or carrying around Gatorade and some Ritz crackers everywhere you go. And drowning your food in salt because “it’s gonna make you feel better.” It gets tiring after a while, it really does.

Living with POTS as a teenage girl who goes to a public school isn’t that easy either. I’m told I “need to go to the hospital to be un-infected” and that I’m “contagious.” Since I have a syndrome, I am made to feel automatically disgusting and am not included in anything.

It consists of trying to explain to your friends why you don’t want to hang or can’t hang out. Trying to explain why you canceled last minute.

It consists of wondering how to get through each day without overdoing it. Trying to plan ahead with everything. Then there’s the anxiety and depression.

It means that even if I lie down for hours and relax, it is still an issue to do everyday activities. An example: going to get the mail. You feel OK, then you start walking and you don’t know if you’re going to be able to make it back to the door.

It consists of seeing pictures that your friends posted of them at a beach or at the movies and wishing you could be there. Because at one time, you were them. You could enjoy life’s simple moments.

It means you might sometimes feel like you’re not loved, not wanted, or other negative thoughts. You know you’re loved and wanted, but your illness can make you think otherwise.

It consists of some days when you’re able to stand up without being dizzy, when your heart isn’t fluttering all over the place, when you’re OK that day. But the next day can be the complete opposite.

It means that someone without an illness won’t need any effort getting out of bed, but you, us, need at least three times more effort to get out of bed.

It consists of standing up and feeling your heart beat faster and abnormally. One moment your heart rate is in the 70s, then 50s, then 130s.

People with POTS do need a lot of support. We need to be told how much you love us each day. We need to know that we’re “normal” even if we’re “different.” We may be a handful at times, but we need help with simple tasks.

POTS has changed my life and my perspective of it. Life isn’t all that bad, you know. Life is pretty good. (And that’s coming from someone whose illness has changed everything.) POTS isn’t a life-threatening syndrome, but it definitely, honestly, is life-changing.

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Thinkstock photo via artlazareva.