Dear 14-year-old me

I know your life is bewildering right now.

There’s so much happening that you don’t understand, and you’re afraid.

You’re scared that you’ll never find out what’s going on with your body.
It’s okay; we DO find out. It’ll be a crazy ride, and we have to wait five years to be correctly diagnosed. But what you have is real, it has a name, and you’re NOT crazy. Turns out there’s a whole bunch of things wrong with your body, but the one kicking you around right now is called POTS, and it’s a kind of Dysautonomia. I know right, ‘POTS’? Who even named this thing? But you’ll be so relieved to find out what you have, that you won’t even care that it has a name like a saucepan.

I wish I could tell you that after diagnosis, everything will go back to normal. Unfortunately, it doesn’t. POTS isn’t something they can just give you a magic pill to fix. Despite trying many different meds in the years after diagnosis, including the ‘miracle drugs’ Florinef and Midodrine, we haven’t found anything that gets us back to anywhere near fully functioning. At least, not yet. Maybe 30-year-old us will have more news about this.

By the time you reach 26, you’ll have learned a lot about the medical system, and most of that naive shine about doctors will have worn off.

​You’ll realise that doctors don’t always have the answers (and that only some of them are honest about this). There’ll be a lot of this happening:

Beaker.001

It will become rare for you to meet a doctor who doesn’t ask if you have medical training (we don’t, at least not in the traditional sense. We’ve just been sick for a long time, and have learned a lot along the way).

But right now, you’re still new to all this, and it’s scary. So go and thank your parents. Seriously, stop reading right now, and go and thank them!  Mum’s determination to find a doctor who could help us is the only reason we end up getting diagnosed properly. She spent so much of her limited energy organising appointments for us, filling out forms, researching, journaling side effects of meds and diet changes… and letting us soak her shirts with tears (sorry Mum!). She believed in us through the long, difficult, messy process. And Dad distracted us, and made us laugh. He’d watch action movies with us. On days we couldn’t get out of bed, he’d sit on the edge and tell us funny stories. He’d make us lunch: toasted sandwiches with tomato sauce smiley faces. You have awesome parents: make sure they know how much you love and appreciate them.
Smiley sandwich
What else can I tell you? I know you’re curious about life after school. I don’t want to break your heart – I know your love of learning, and your passion for sharing knowledge with others. I know how you’ve had your teaching career planned since preschool. But because of POTS, we never even finish the University degree you got a scholarship for, let alone work full time.

Don’t despair though. We do end up teaching, just not like we’d envisioned. A few afternoons a week at home, tutoring kids on the piano. It’s seriously awesome, seeing how excited they get when they learn something new, or can play that song they’ve been working hard to get under their wobbly fingers.  Not ‘officially working’ also means that we can volunteer for other things sometimes too, and that’s pretty special.

I know you worry about friends. Everyone else is having sleepovers and parties and going to the movies, and you’re struggling just to make it to school five days a week. Even before we got sick though, we never really fit in. Take heart though! When you grow up, you make fantastic friends. Some of them are local friends that you see every week. Some have moved away and you only see them occasionally. Some of them you talk to online and have never actually met in real life. But they’re all wonderful, supportive, unique people.

And…there’s this guy. I can’t tell you too many details now, because you’re still too young. But I can tell you that you don’t need to worry that your broken body will mean that no guy will like you. This guy, he knew about our silly body, but he didn’t mind one bit, he just loved us. And he still does, eight years later (almost six of them married), despite our body slowly falling to bits.

I guess what I really want to tell you, younger me, is that everything will be okay. Not the ‘okay’ that you’re picturing now – the one where we have a healthy body. But, despite our silly body, we have a wonderful life, and so much to be grateful for.

xx S.

(P.S. We get old really fast. Seriously – slow down girl! Don’t be in such a hurry to grow up).

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