I Am What I Am Not *repost*

The following is reposted from my back-up blog, BM2. Whilst it is not the most cheerful thing I have ever written, it is part of me, and it feels wrong not to have it in the proper archives.

What follows is one of those times when blogging for me really is therapy. Feel free to look away now.

All my adult like I have been struggling not to be defined by what happened when I was 14. I refuse to base my personality on some thing that happened because a doctor refused to make a house call. But, no matter how hard I fight not to be defined soley by what I don’t have – what got taken away; what I had no choice or control over – there is inescapably part of who I am now that is because of it. I am who I am, to some extent, because of what happened when I was 14 and all that followed after.

It is not a conscious decision exactly, but I am the type of adult I am because – possibly – the traditional female role as incubator of the next generation is denied me. Or at the very least made a lot less likely.

I never wanted kids. Even “Before” I never was one of those to play with dolls or to be the “mummy” when we played grown-ups. I identified with George in the Famous Five, not Anne. I went through puberty with the knowledge something was a little bit wonky with my insides and it affected my outlook more than a touch. I looked at alternate pathways. The alt-pathway is so much more fun so I’m not unduly upset, I will hasten to add. 2.4 still doesn’t hold much appeal.

I am trying to express something that is not all that clear to me. Do I say I don’t want kids because the biological chances are slimmer and I am in self preservation mode, or because I really don’t want kids?

Why am I thinking on this now?

Because after ten years I have finally wrested a diagnosis from the doctors and that diagnosis is PCOS.

I have been tottering around some sort of diagnosis for years, but for the past six months I have been undergoing the latest in a long (and slow) running barrage of tests and explorations all designed to ascertain really how fucked my reproductive system is. We know it is screwed at least halfway round the thread, but is it tightened all the way down, that is the question?

I was dreading actually getting a diagnosis. I couldn’t put my finger quite on why till I forced myself to realise it is because I am not sure I really want to know. Getting answers means – well – it means you have answers. An answer of “actually, all is normal and tickety boo” peversely would still throw me as much as a “you’re totally screwed Ms Kemp”, because the former means I have no excuse. “I can’t” is somehow more acceptable than “I don’t want”. “Don’t want” just makes people smirk knowingly and count down the days till you conceive. Plus, “don’t want” makes you look selfish. “Can’t” gets sympathy.

“Can’t” and “look at other options” are part of my identity now.

Much though I thought I would not define myself by a negative, I am defined in my own head partly by my (potential) inability to bear children. To be told I actually could would, bizarrely, take away a crutch and force me to reevaluate my self out of my comfortable hole. Then again, the alternate diagnosis of “oh shit…” is not exactly a comforting prospect either. “Oh Shit” forces you to deal with different problems. To have it confirmed means… I don’t know what it means.

Basically, ignorance is bliss but my mum told me to get to the bottom of the matter and I am a good girl, so I am doing as I am told. A tentative PCOS diagnosis two years ago was nice. The assorted symptoms fit and it explained a lot but didn’t confirm/deny anything so I was still in blissful limbo land. The doctor (and my mum) wanted a final set of scans to make sure.

So I got the first scan only to be told the “Oh shit” option.

Turns out? The “Oh Shit” isn’t much fun either. It is never a good sign when the radiologist goes silent and mutters “oh dear…” under her breath. Oh goes “Wow…” when measuring bits and pieces on the screen. Turns out a 6.5 cm cyst is not the best thing to have. What would have been nicer is that she could even have found the other ovary at all, but it is probably just very good at hiding.

That’s it. No “worry/don’t worry” just a “my Grandma, what big cysts you’ve got”, which completely looped me out. Of course the NHS website is very soothing about these things and logic dictates if it was seriously worrying I wouldn’t have to wait 6 weeks for a follow up, but even my basic understanding of biology leads me to think an unexplained lump 6.5 cm big anywhere in your body is not a good thing to have.

At the end of the first scans I was further down the Oh Shit branch of reasoning and – you know what? – it is not that comforting after all to have a decade of suspicion reinforced. It would have been nice to have it all over-turned and be forced to reevaluate myself as a “have options” girl instead of firm up the “no chance” argument. Save me from pity. Save me from myself. Save me from my brain hurtling round my head at a gazillion miles, with none of the stations it is likely to stop at looking particularly inviting. I am making a mountain out of a (fairly) large cyst, I know that, but experience tells me to plan for the worst. I am reaching hatch-battening time and dear god I think it is going to be a big storm.

I got the results of the second scan and, as expected, PCOS is where things are at. All things considered, it was more a storm in an extra-large Starbucks mug than anything else. Still stormy, but it could have been one hell of a lot worse.

All the way through I was convinced that ignorance and “who the frack knows what is going on in there?” were bliss. I would rather have kept at the guessing stage than the whirlygig my thoughts and emotions have been on lately. But now I actually do know what is going on, I am rather comforted. As there was never any chance of a “you are normal” diagnosis, the diagnosis I have been handed is about as “nice” as could have been expected. On the scary scale we are talking a PG as opposed to a full on straight-to-video 18+ it could have been.

Labeling things is so very satisfying I find. Once you name something, you set limits on it, make it definable, approachable, surmountable.

I can see a way forward now. I know my options and I know what I have to do. At the same time I don’t like it confirmed that from now on I am the girl without her health. My body is making it very hard to be anything other than the girl who defines herself by what she hasn’t got. I am rapidly becoming the girl I never wanted to be. The girl who others pity. Seriously, if I was a dog you would have had me put out of my misery by now!

I saw the speech therapist the other week and we got to the bit of the consultation where you have to list your medical history. Ten minutes and several pages of notes later, she said “My, that’s quite a lot to have happened in one so young” followed by her being annoyingly (but sweetly) sympathetic and asking if I had had counseling to help. Actually, I have. She asked me if I was angry. I was.

For the longest time I was very, very angry at the doctors, at myself, at the universe, at my family, at everyone. But anger just takes it out of you and now it it is just the situation I have to deal with. Things could be worse, things could be better. Things just are. Why waste your time wishing things were different? This is the life you have to live so you might as well get on and enjoy it.

She says, over and over, because saying something often enough will make it come true.

I have PCOS. Many people have it worse than me. It turns out that the assorted medications I could take to help are, for one reason or another, not suitable for me. Which is a state of affairs that doesn’t surprise me if I am being honest, because I never was one to make it easy on myself. So I am left with lifestyle change and a future that is just so depressingly healthy.

I think that is what is bugging me most now. Oh, for a magic pill I could take to make everything all right and that would let me keep on living life (and eating) as I want to live life and eat. But there is no magic pill. I need to take responsibility for myself, depressingly grown-up though that sounds.

*shrug* It’s all character building, right? If nothing else it means I have things to write about on the blog.

I’ve got some amazing and touching responses to this post – thank you.
If you’re worried you might have PCOS, you have PCOS or you know someone who does, I would recommend you talk to a healthcare professional. There are also lots of very good support groups out there such as Verity in the UK and these in the US.
If you want to talk to me, but don’t want to leave a public comment, please feel free to email me on cas.brightmeadow[at]gmail.com