How Not To Talk About PCOS
What Not To Say To Your Newley Diagnosed Friend
Here we go again.
About 6 months ago I wrote a version of this newsletter - and ended up being, once again, banded around the health service to realign diagnostically. Revise, revision - and back to square one of the same diagnosis. Whelp. Never mind how I could have saved 6 months waiting time if ‘patient experience’ had been centred from the get go. (*Cough* gaslighting! *Cough*)
So. Here is an updated version of how not to talk about Poly Cystic Ovarian Syndrome (PCOS) if you have a friend who has just been diagnosed. It’s been a long week - this has been finally diagnosed, along with further investigations for Endometriosis to come in the not too distant future. There has been a lot of cake and a lot of sleeping this week for this reason.
“Got any new diseases since I last saw you?”
This was said to me a year ago when the ‘diagnostic journey’ began; I’d been ill due to Covid 19 for just over a year at this point, and still being shunted round. This is worded to be an invasive demand; it’s also not a joke or ‘funny’. This was not something I felt comfortable sharing - more shoved into a corner, if anything. From there, this disease - something out of my control - began to be equated with me as a person. This was beyond painful.
*Anything with the semantics of mother*
Women don’t have to be parents! It’s the 21st Century - no one has the right to demand this of a woman, and no, it is not a compliment to use semantics such as “she’s so mothering”, “motherly”. No one has the right to ask “do you want to be a parent?” Spoiler - it is not a given for all. And there is not a binary choice of career or child, either. Didn’t feminism prove that already?
“You need to not define yourself through this.”
A friend of mine said this tactless statement recently. This is beyond harmful - because we can’t just magic away our reality. We are allowed to be pissed off, upset, utilise an experience as a verbal pointing.
“My cousin had it worse”
And? Good on them - if someone is telling you their diagnosis, which is an act of trust in itself, just hold them in that single moment. Hug them, let them cry if needed, rant or scream.
“You’re becoming a man!”
Oh transphobia. Can you **** off yet? I have a few points to make on this:
To define a woman solely on her reproductive capability is what feminism taught us not to do; it is a hijack in action by the patriarchy to cause division otherwise. There’s such a superiority to this, too. I called this newsletter The Disabled Feminist as I’m sick of disabled women being used to point score without ever being centred in conversations; we are spoken over constantly. If you want to support a cause, surely alienation is not the way.
Note the politicians who say they support actions to support women - who then cut back on vital supports. The contradiction is a hypocrisy - a patriarchal product. And a detriment to us all; in the UK, it should be pointed out women and children bear the brunt of government cuts.
PCOS causes facial hair growth in part; I’m pale with dark hair. It’s something some women have. It’s not okay to replace fact with this micro-aggression; it is in no way funny, just plain hurtful.
*Suggests painful beauty treatment to act as a cure*
Whatever happened to beauty being in the eye of the beholder? Well, consider the ‘ugly law’ rhetoric now becoming fashionable, and you will see what a lie this is. (Google this horrible time in the US - it will shock you.)
I told one person this was an issue under investigation - and the immediate response was, to make myself a better person, I should go and pay for expensive, painful, and invasive treatment to control the hair growth on my face. Unless you look very carefully, you can’t actually see it on camera - but this felt really horrible. And to ‘cure’ myself? Some sisterhood this is.
“You deserve this”
No one deserves anything of pain or of sorry or of ill health. A post viral infection probably lit the fuse of a genetic sequence that would have likely remained dormant otherwise; I had been beyond careful. Humanity, you suck to not let this idea of harm go yet.
I hold my hand out to Omicron, the variant that caught me - in that it is something I walk alongside, and I make my peace with it. I am not a tragedy, just the same as any other disability; it’s a texture of a life lived. The duty we have is to live a life that is true.
Catch Me In Action
🌷 AccessAble is hosting a webinar next week - and I am on the panel! Book your place here.
🌷 Naidex, we’re coming to you! I am presenting a talk about How To Freelance at the UK’s biggest disability conference later this month - last call for tickets here.
🌷 And tickets for a course I’m teaching from next month are available here.
The Book Plug
My debut book is being adapted into a pilot course! And it’s on sale this week for a princely sum of just over £10.
