I Need to Grieve for Who I Could Have Been Without POTS


For me, it’s a daily struggle.

I try to love my life. I try to remember that it could be so much worse. And most days, I succeed.

And then there are the days I can barely stand because of the pain.

And here’s the thing: Those who are healthy usually can’t understand. You only truly understand when you’ve been through it too, and so I’m glad most of my friends will never really get it. And those who are around me more, who have been with me through it all, understand better than others.

But still, there are days that I just need to grieve. To grieve for who I could have been. If I wasn’t like this.

And healthy people might understand the first time they see you grieving…but the 10th time? The hundredth? I imagine them thinking, “Why aren’t you over it yet?” or, “Can’t you just move on already?”

But here’s the thing. Every day that I am able to do something and act normal, I come home and start thinking, “I was just like everyone else there.” Maybe it’s sitting at a table making gingerbread houses with friends. Or going dancing on a good day, where there are twice as many girls, so I sit out a lot, without looking strange. Or just going out to eat and being able to eat normal food, when I’m not on a super restrictive diet. But in any case, I feel normal.

It’s called an invisible illness for a reason. And until the last year, all of my symptoms were invisible. Now, they are becoming more visible – my legs becoming weaker, as the dizziness gets worse. The tremors starting, worsening with stress. My postural orthostatic tachycardia syndrome (POTS) is becoming more and more prevalent. And as this changes, and as I look toward the future, and back to the past, I grieve.

Who might I have been, if this hadn’t have started so many, many years ago? I know I had 12 fairly normal years, but I don’t remember them. I remember the last seven years, instead. It feels as if my life has always been like this.

And yet, I can’t help wondering what might be different…Would I be stronger? Healthier? Would that be the only difference? Or would I be an extrovert, instead of an introvert? Trust easier? Less aware, less mature? More ‘”fun?” Able to do more, without worrying about causing a flare, without always thinking about the cause and affect in regards to my health?

There are good things that could have been, if I was just “normal.” If I was healthy. But there are good things that have come from my illness, too. From the life I have had, instead of the one I could have had. And that’s what I focus on.

But on those days where I can’t stop crying, where it feels like my head is going to explode, where I can’t stand, and my hands are shaking so hard I can’t even read a book…Those are the days that I allow myself to grieve.

Because although I love the life I have, with all its many painful days, with all of the imperfections, on the bad days, I just wish that I could see what the other life could have been. What I could have had. Who I could have been.

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Gettyimage by: Artem_Furman


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