hospital; a rant about poland syndrome
This was the time I was nervous about an operation until a rainbow chummed me…
Edinburgh Marine Gardens and Zoological Park was a sprawling amusement park, the first of its kind in Scotland, which contained a domed music hall (The Empress Ballroom), bandstand, rollercoaster, ice rink, billiard hall and outdoor cinema and theatre plus a small zoo with lion cubs. It lived along the shoreline from Kings Road in Portobello to where the Seafield Cat & Dog Home is now. It opened in 1909 and 3 quarters of a million people visited in its first year. Portobello had a train station at the time, along with trams and was a popular return holiday destination for families.
The amusements had a 3 tier rail ride, joy wheel, mountain slide, maze and river caves. The Ballroom and band court held daily all-star variety shows by the vaudeville and music hall groups singing, dancing, magic and comedy. It also featured a very Victorian and deeply racist Somali Village, where you could come and stare at families who were brought from Somaliland to carry out their day on display. At the time ‘human zoos’ or ‘ethnological exhibitions’ were tauted as educational entertainment but in reality they were a colonialist dehumanisation spectacle similar to the circus freakshows, popularised by the hugely famous Barnum circus, that toured western countries. A freakshow would exhibit ‘freaks of nature’ - those with biological rarities, heavily tattooed or pierced folks, along with those performing shocking and dangerous acts like fire breathers and sword swallowers
The park closed at the beginning of the first world war, all demolished except for the music hall which was commandeered as temporary accomodation for troops.
My kid’s dad and I got keys to a 1930s bungalow which looked out over the car sales spots that now live on that stretch above the prom, that had once been home to the music hall and seaside vaudeville, on the day that our son was born. An old boy called Eric had lived there with his family since the house was built. There were photos of them all in the garden and their daughter had come to hand over the keys, she got all emotional thinking about growing up in the house, happy a new family had bought the place. I spent the first 2 or 3 months of being a new mum trying to project manage a bit of a renovation, with new plumbing, plastering, pals helping to paint rooms, new flooring and all sorts. We split when our boy was 2 and me and him finally moved out and into our flat in Portobello when he was 3.
Those first few weeks of being a new mum were stressful and weird. My entire body was different, my hormones fighting to do things parts of me weren’t able to do. I’d had a necessary elective c-section, something everyone seemed to think was their business. I had to have it because of previous surgeries (another tale for another day, all about how we store trauma in our gut). I’d been kept in hospital an extra day and my bladder and brain had fallen out when I was numb from the tits down. I was eventually sent home to my folks place with a catheter to drag around for a few days. I also was given an industrial breast pump as my milk hadn’t really come in. And finally she gets to the point of the tale. I have a condition called Poland syndrome. You wouldn’t know to look at me now but for the whole of my teens and for the first few years of being a parent it was painfully obvious to me. I didn’t get a name for it until 2019 (my kid was already 6 by then) when I had to get the first of my annual mammograms after my mum had breast cancer, which runs in the family.
Poland Syndrome is a rare congenital birth defect. In boys and men it usually presents as missing chest wall muscle, a concave lopsided chest, sometimes a shorter arm, leg, hand. It can be different in different folks. In girls and women it sometimes, like for me, only becomes apparent when you hit puberty and suddenly your breast tissue only grows on one side.
Both sides of my family are short big boobed women. So the difference was very apparent. Nowadays I think girls are offered ‘corrective’ surgery as soon as the issue is made known with follow up surgeries if required but when I was a teen they made you wait until they thought your boobs were fully grown before you could get NHS treatment. And I know it’s not something that is universally available at all, it’s a postcode lottery in the UK and in other countries an incredibly expensive surgery or not an option without travel.
Spending the entirity of my teenage years with one massive boob and a tiny one on the other side had a huge psychological impact on me. I felt like a freakshow. A vaudeville side-show. It affected my posture, the clothes I wore, the activities I tried to avoid at school, I would skive off PE and any sports as often as possible so I didn’t have to change in front of anyone or take off baggy jumpers and cardigans. I would stuff extra padding into the left side of a wonderbra, which come with removable pads to sit under your boob to maximise their pertness. But I used one a size that just made my chest as even as possible and I wore other layers on underwear on top to try to hide under them. I avoided boys for a long time. I was/am awkward as fuck anyways!
“I’ve had a bunch of operations on my poor tits and ass for Poland Syndrome and Crohn’s Disease. There was this one time that I was about to pass out, high as fuck from pre-meds and my anaesthetic and I said, in a kinda posh English old lady voice, “I’m used to a whole different type of theatre, darling.” And I passed out hearing them all laughing.”
I finally got surgery when I was 19. I struggled through a couple of relationships feeling incredibly self conscious and with extremely low self esteem. I look at photos of myself back then and I was a beautiful wee mad thing but I really did not feel it at all in any way. I reached for many unhealthy coping strategies and now realising my neurodivergence all these years later, a lot of the more impulsive damaging behaviours have context.
I think I spent most of my teens and the years after surgery when I still numbed out that low esteem and getting into horrible damaging relationships with men in a state of passive suicidality. I really did not care for myself anywhere as much as a healthy confident human should and I got myself into a lot of toxic and dangerous situations. I’m no victim, I lived through them all despite the state of my mental health and lack of self care. But the lack of information about what the condition was just made me feel like a total freak and subconsciously I continued to punish myself for that. The surgeon I spoke to as a teen hadn’t given me much information at all about what the condition might be, that I wasn’t the only person in the world to have it or any mental health support to deal with the self hatred that lack of knowledge brought with it. And of course this was all before smartphones and instant access to all the information so I had no way of researching and finding out for myself until all those years later when a doctor at the breast screening clinic just said ‘Poland Syndrome’ in passing while checking on some mammogram images.
In the hospital for ‘corrective’ surgery I felt vain, selfish and guilty as I was in a ward with women who were getting breast surgery for cancers. I felt like I was there for ‘cosmetic’ surgery. At the time it was still the fashion with the women the tabloids brutalised and objectified to have big fake boobs. All the magazines we read as teenagers laid into these women as fake bimbos, as dumb shaggers. There was such a pervasive idea that women with cosmetic surgery were second class citizens, zero respect offered but miles of objectification and judgement as the male gaze and misogyny rule. We built up women like that only to treat them like they were lacking in intelligence and only capable of being sex objects. Lad culture reigned and with it big boobs meant you were a thick slapper. Feminist pals would talk of cosmetic surgery as falling for patriarchal demand and not as having ownership of your autonomy. Even after having the surgery and now having 2 big boobs I felt that I had to hide under clothes. I regularly saw people talk to my chest instead of my face and it horrified me.
After the surgery in my teens I was pretty self destructive for a number of reasons but I didn’t have the condition on my mind 24/7 any more. I felt a lot less self conscious for a long time although I still usually covered up and often lacked the confidence to dress the way I really wanted to to express myself. I think there was a brief time going out of a Saturday night when I’d dress up and feel good but I was surrounded by peacocks I thought were creative and interesting people but really they weren’t and they took advantage of me in many ways which is a whole different story which I’m also sharing on here soon (for anyone who’s been reading these for a while you’ll know I’m talking about my abusive predatory serial rapist ex and his pals and anyone else, trigger warning). The condition faded from my thoughts for a good long while, only reignited again when someone spoke to my chest or made some comment about my body or plastic surgery. It only really came back as an issue in pregnancy.
As a pregnant woman I received 12 pieces of literature in different forms all about how breastfeeding is best. Not a single one of them makes any mention of the fact that some bodies will not produce enough milk to sustain a baby, not one mentions that elective sections and not going into labour might affect things, not one makes any mention of how to protect your mental health as a pin cushioned exhausted sleep deprived new mum if you just cannot breast feed. Not a single one.
None of the midwives I saw shared any knowledge at all about irregular breasts or the possibility of being unable to breastfeed either. I spent the first 8 weeks as a mum, with those stitches permanently attached to an industrial sized hospital breast pump, or if on site at the new place speaking to the plumber, plasterer, flooring guys I had a portable pump with me. It was constant. My son also hadn’t really latched on. My boobs never got rock hard and full of milk like so many new mums moan about. I’d spend hours pumping and only get 10ml of milk. I felt like a failure as my body hadn’t been able to naturally give birth and wasn’t capable of sustaining my baby. I was absolutely shattered and felt like I had very little support. My mental health was in the toilet for a lot of the time despite being one of the lucky ones that bonded straight away with my baby.
Attempting to breastfeed and I guess the changes in hormones from pregancy meant that once again my boobs were completely different sizes. The right had grown and dropped and the difference was probably greater than it had been in my teens. I again just hid away, wore baggy stuff, didn’t let anyone see me naked.
This lasted a few years until a therapist I was seeing suggested maybe visiting the GP about it again after I told her the whole story. And so the week before lockdown I had a breast reduction operation.
In January 2021 I made a self portrait, kinda of my boobs being reborn through my velvet curtains, as a wee lighthearted way of dealing with my experiences. I also just pushed myself to write about it and I shared it on instagram. I’ve since archived all my posts to start again and to be able to share this space and my exhibition in a more concise way for my scattered brains. But I wrote a lot of what I’ve said here. I think it might be the boldest thing I’ve ever done for myself. I found it to be so healing. I’m so glad I just laid it out and shared experiences online when I first made that image as it opened up so much for me.
I had zero idea so many folks with first hand experience, either with the condition themselves, parents of children with it or charitable organisations looking to empower those with it and to spread knowledge of it would get in touch. I also find lots of the folks I work with through my wedding photography are health care workers and for them to read it and hopefully talk to colleagues about it feels very important.
Let’s skip past the whole pandemic situation for now and just say that the last year or so, as I’ve unravelled so much of myself through accepting my neurodivergent brains and letting all sorts of past trauma surface I’ve been making naked self portraiture to really regain my autonomy from all the traumatic experiences. I’ve been swimming topless in the murky sea at Portobello. Reclaiming the waters from the Victorian freak shows and dancing on the sand in honour of all the vaudevillians of the past. I’d fucking start a topless darts team if I could aim better.
Creative play has saved my life. I’d urge everyone to make time for it in whatever capacity they like. Creativity is innate in all of us, society just slowly tries to educate it away. A free, solo expansive never ending source of healing, growth and adventure and we often overlook it or leave it on a long list of some other day.
Here’s a link to the first of many black ans white self portraits made at home, developed and printed in a darkroom cupboard in my flat. There are more recent ones in the exhibition too.
NOW LOVE exhibition runs at Agitate Gallery on William Street in the West End of Edinburgh until 8 March, the gallery is open Tue-Sun 12-6
Thanks for reading, tell anyone and everyone you know who ever works with women’s boobs in any capacity!
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