A Letter To My Cyst-ers*
All That I’ve Learned About PCOS
A diagnosis of Poly Cystic Ovarian Syndrome (also known as PCOS) can really suck. There’s not much more to say about it, other than that. If you have been diagnosed or are en route to diagnosis - I see you, and I hear you. And I wish I could hold you all close on this one.
It’s not an understood condition, either, by society in general or the medical establishment. Such is the way with women’s reproductive health, while we stand at the edge once again.
Good luck in diagnostics - or better still, not being laughed out of the building. Because women be crazy, mysterious. Let’s just flash back to then! Even The Guardian thought it necessary to deep dive into the condition, which was strikingly unusual. It’s almost like we’ve always articulated the issue - we’re just not being listened to, on the basis of ingrained sexism. *Sighs*
(And that is doing us all a disservice meanwhile. Patriachy ain’t just hurtin’ the women.)
Mythbusting for Happiful Magazine this month got a response I hadn’t expected. I have two features in this month’s issue - one was the cover story in the right hand column on the bottom of the front page - but it was the piece with the most reaction I have had to any writing in a long time. That was unusual, because usually I just sit at my laptop, making the contents of my brain tangible, coming ‘out to play’ not very often or only when I need to eat.
Meanwhile, a subscriber of this newsletter asked for a ‘what to know 101’ type piece - we’re going to call this my love letter to similar women, caught in this ridiculous cycle of indifference. We just need to be seen. This is the grand sum of what I have learned in the last two years, how this has felt, and what I wish to impart to anyone in the same circumstances. I love you all dearly.
* And yes, this is a dark humoured pun.
#1 Know Your Rights. The NICE guidelines in the U.K. are the standard of care you *should* be receiving. Walk out, ask for another doctor if there are any red flag! (I wish I’d done this when told no doctor would read my medical records - and that no service was designed to help me. All in the mind, you see! Add in a likely diagnosis of POTS, and of course I’m ‘crazy’, in need of anxiety therapy.) You are allowed to ask for second opinions. Medics should be supporting you, not choosing the function of a body. They should not be choosing your reproductive capacity or a future for you.
#2 Boundaries, boundaries, boundaries. It may be lonelier, but it’ll be far more soulfully healthy. You are not lazy, you have a chronic condition that causes significant fatigue; you will need to make changes on that basis, sadly. (I miss running with my dog. And badminton - I really, really do miss that particularly.) You are not lesser because of excess hair. You are no lesser or better - this is a label to describe a body and how it functions differently, and all of the deeply fucked emotional nuance in between. That’s merely it.
Boundaries are act of self love and respect in the long run, especially when it comes to what may feel like an emotional whiplash post diagnosis. We learn the hard, painful way otherwise. We are not supposed to justify ourselves every five seconds to people we are told are ‘friends’.
Any friend, partner or family member who engages in the act of shaming is showing a behaviour that is not okay. Any friend, partner, etc who does this is not worth time or the capacity of limited energy we have to offer. You do not have to explain, justify or legitimise. Anyone who takes issue with that is the problem. Shame dies in the light of day, and we can drown it out by being our noisy, exuberant, multifaceted selves.
This was something that occurred to me earlier this year. My friend took a sneaky photo of me presenting a talk at Naidex - which was sold out - and I had 30 minutes of questions afterwards, which prevented me leaving. I think this is maybe my favourite photo of me - because it shows a lack of shame. I was allowed to be loud, messy, imperfect. Boundaries are a good thing - they are meant to be inconvenient for a reason. That is how we grow.
#3 Allow for the softness. Advocacy for the self is often taken as meaning to not be seen as weak. (I treasure this newsletter for the space that it affords me, as I was told colleagues of mine look for weakness as a ‘tactic’ - it’s a space of self expression elsewhere, away from that catty infested den of iniquity.) However, a caveat: to be kind - to others, to yourself, and with boundaries - is never weak. Allow for the softness, the nuance of feelings without having to moderate yourself.
#4 2 things can be true at once. One for the medical establishment, this one. You can have more than one diagnosis! That being ignored meant more than a year of additional testing I did not need. Please, please guard this one aphorism.
#5 Care for the self. I guard my ‘rituals’ with a sense of militancy now. The idea is simple: if I feel my best, I can show up for other people. So! Water or other liquid: drink it. Get a bottle to travel with, and mark it up. Continue on. Moisturise - the more bland, the better. (Perfume in products makes for acne on me, personally. Grr.) Make sure you see daylight daily. Go at your own pace - physically, and elsewhere. Maybe emotionally. Allow yourself to feel.
#6 We gotta talk about the brows. I’m not a fan of my eyebrows; my family have always thought it appropriate to comment on them, one of those ‘relative has a legend of themselves from a young age and they aren’t allowed to change’ scenarios. I was also bullied at school for them, especially because I wore glasses. This was in a time before glasses were commonplace, along with braces - Darla in Finding Nemo was an often cited caricature of comparison. (Google it.)
However, I feel better in the sense of if they’re orderly, I feel ordered. They are the sign of my PCOS, largely; the bigger they are, the more I need to stop and slow myself, and execute care a little bit more.
Benefit Brow Bars do packages for eyebrows and other hair removal; they also sometimes let you try on the products. This is for me and only me - when you start to show up as yourself and/or for other women, there is a kind of power to that. There is something joyous about that, in inhabiting a body - and it’s outside the control of a patriarchy.
#7 Add sparkle. It’s contrite to admit or write - but it follows the same logic of Dophamine dressing.
PCOS means being at more of a risk for mental health issues, such as anxiety and depression; that was definitely me last year, which landed me in a therapy office from the NHS. Once I’d received treatment, even though it was fairly useless, I started to put in small habits - just small acts of resistance tp push back against expectations of me as a ‘western’ woman. Body alienation ain’t a nice place to be, and I wanted ownership of myself instead of this performance. I was hurting because of the amount of commentary and correction from ‘friends’ in particular - I needed to be thinner, ostensibly. That one stung. Be less ‘woman’. No, not like that! The same was often being made of me in medical settings.
Even if it’s just one thing you put in your handbag, or a sentimental piece of jewellery, make it a daily practice. It’s a tiny act, but it’ll do wonders.
I do some video production as part of my job - and that means presenting on camera. (I also sometimes speak to audiences. Yep. The sense of doom follows me everywhere, I swear.) I know my face shows ‘up’, and betrays the issues beneath sometimes. I don’t feel very confident in that, in having to be on show. NARS has a setting powder that has tiny glitter amounts strung through it. Each Christmas, I buy myself a new notebook and one item like this - it’s a tiny act of resistance, something that is just for me. And I feel just that little bit better; I am turning up as myself.
Subtle sparkles. What more could anyone want? (And yes - it’s on my Christmas Wishlist.)
#8 Be on the lookout for fertility myths. The medical profession is rife with it, alongside ‘coaches’ and social media influencers. Find the reliable research that is not outdated, and push back against the myths; advocating for yourself fiercely is an act of love and resistance.
#9 Think about inflammation. This is not advice - more a recount of what I felt was appropriate for me.
PCOS came about thanks to Long Covid. We know that this can leave inflammation throughout the body - that’s what I remember most about waking up from quarantine. PCOS is also a condition to do with inflammation.
I am in no way suggesting a link - because there’s no evidence - but I started to eat more anti-inflammatory food as a result. Dropping alcohol worked wonders for me. I eat more fish, more salad based ‘sides’ - Avacado was an absolute favourite thing for months on end, just as a snack. Costa also has Smartwater - with electrolytes - available. At a conference earlier this year I felt so alive with that ‘weapon’ in my arsenal.
I feel better, not ‘cured’, but at least more functional than 18 months ago. It may be worth looking at diet, etc. But be kind - it’s not a legitimation of self denial, or having to ‘earn’ food. There’s none of that here. The body is a vessel for life and experience - the purpose of living is not punishment or shame of a self. Balls to that.
#10 Curiosity matters. I work as a journalist, meaning it is my job to ask awkward questions; as a child, I remember being continually told off for being too noisy at the best of times. But curiosity is what lead to my diagnosis. My brain fixates if there is an unanswered area - enough to stay awake at night, ticking over and over. (Yes, it makes sleep unobtainable sometimes - and yes, I have always been like this.)
To be curious is a kindness, but it is also an act of self compassion that we can choose to exercise for the sake of ourselves. If a medical professional is not taking the time or brushes off your questions, that is not being informed - you can and should ask for another expert or a second opinion.
Please be loud about this, and keep going.