More than embarrassing…

We’re all familiar with the reminder letters and campaigns urging us not to miss our cervical smear test. We are rightly told how important they are in detecting cancers early. I’m glad these tests are available. I am also happy that we are educated on why these tests are so necessary. However, I find myself increasingly frustrated with the messaging.

So often when a person or organisation wants to encourage people to attend cervical screenings they focus on how easy it is. We’re told it is silly to be embarrassed and it will be over in a flash. Don’t risk your life over 5 mins of feeling awkward is repeated. Smear tests are confidently declared to be not painful. Just a little discomfort, nothing to worry about. While that might be true for lots, it is not full the picture. The patronising assumption that people miss smear tests because they’re self-conscious is harmful. Many people have valid reasons for their reticence. Addressing those issues would be a more effective way of increasing uptake numbers.

Research from Jo’s Cervical Cancer Trust and Rape crisis revealed that 72% of women who have experienced sexual violence have skipped or delayed a smear test. When you consider that at least 1 in 5 women have been sexually assaulted you can begin to understand the scale of the issue.

Birth trauma & pregnancy loss also impact a significant portion of those who require smear tests. Gynae exams & cervical screening require being in vulnerable positions that can trigger a trauma response. Recent research is finding that baby loss & birth trauma often results in PTSD. So, it’s easy to see why a smear test would be not a easy exam for those who are affected.

There are also medical conditions/physicalitys that can make a smear test very difficult. Conditions like ,vaginisimus, endometriosis, cervical ectropion and more can make smear tests painful or difficult. Cervical position, vaginal dryness, menopausal changes and FGM can also impact how a smear test feels.

Trans men may find smear tests hard for all obvious reason. Dysphoria, stigma, discrimination and more. I’m sure everyone can understand how having to deal with any or all of those things is a frightening prospect. It can also be difficult to access information; trans men may not be invited for cervical screening, there is confusion about who requires the test etc. Of course this may be combined with any of the other issues on this list.

This is by no means an exhaustive list. I just want to be clear that there are many real reason for a person to avoid cervical screening. That being said, how can we make it easier? Well, there are actually a lot of accommodations you can ask for. I don’t see this talked about enough, so I wanted to share that information.

Before I get into the details, I want to be clear that you do not have to disclose anything you are not ready to discuss. You can ask for accommodations without revealing your trauma.

Before the Test

You can ask you GP to take your name off the automatic reminder list if those letters are distressing.

Ask for the test to be performed by a person of your preferred gender.

If you have an established relationship with a Dr/Nurse you can ask to have them do your smear test.

Make an appointment to talk about the smear test. Discuss anything you need to talk about. Be that how the test is done, why is it done, your fears, worries etc.

Request a double appointment to allow time breaks, extra time.

Plan what you will do after the test. You may not feel up to returning to work or you might not want to be alone.

The Test

Take an emotional support person to the appointment.

Request a chaperone be present for the test.

Ask to talk through the ‘mechanics’ of the test before you start. Have the Dr/Nurse show you the instruments used.

Tell the person performing the test any words or phrases that could be triggering for you. If there are words of comfort that are helpful for you ask them to use those.

Explain how heavy/light a touch you are comfortable. If there are areas you would like them to avoid touching if possible, tell the Dr/Nurse.

Ask to insert the speculum yourself.

If you are concerned about specific trauma/pain response discuss that with the Dr/Nurse. For example tell them this part of the exam is usually painful for me or I might be unable to chat/answer questions.

Agree a plan of action beforehand; what would you like to happen if you are triggered/pain is too much. You can decide on a word or sign to use if you are in distress.

Combatting Pain/Distress

Mindfulness Techniques – Exercises like naming three things you can see, smell, hear can help route you in the now.

Distraction – Play music, make small talk with Dr/Nurse, your support person.

Squared Breathing – This sometimes helps me get through acute pain/the onset of panic. Breath in for 4, hold for 4, breath out for 4, hold for 4. Repeat.

Take a comforting object. Fidget object. Scent that invokes calming feeling. Hold support person’s hand.

Discuss having medication prescribed. Things like benzodiazepines can help with anxiety, allow your body to be less tense. Maybe you need a stronger pain medication to deal with the test/after effects.

Know Your Limits

It is ok to stop at any point. If any part of the process becomes too much, stop. You can reschedule the appointment. It is ok to try as many times as you need. This test is for you. You are not obligated to fit into anyone else’s timeline or expectations.

Smear test are an important part of early cancer detection, but your whole health & well being are equally important. Shaming people or dismissing the reason for their reluctance does not help. If we are to increase the uptake rates we need to acknowledge what is actually preventing people from attending. We also need to facilitate ways to address those concerns.

If you require more support you can contact :

My Body Back Project

Rape Crisis (Helpline – 08088 01 03 02)

Action For Trans Health

Jo’s Trust

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Even if I quit…

It’s another gloomy Sunday afternoon. It’s drizzling outside & the day’s main occupation is emptying my over stuffed washing basket. It’s not a terrible day. Just routinely tedious.

It would merely be one more underwhelming day if it weren’t for the lightening crack in my pelvis. The shock that spreads to my back and sinks into my thighs. A monthly reminder. A living memory who’s intensity at times pushes the familiar into trigger territory. What rushes in full colour into my brain? Blood

Blood in my pants

Blood on the floor

Blood on my thighs

Blood in the bath

Blood on surgical gloves

Blood on a hospital chair

A supercut of blood. Staining an array of places I’ve called home, polluting clothing & towels. I can feel the rush of blood in my ears as various medical professionals tell me things I never want to hear. The heat, the rhythmic contractions, the fear rush me from yesteryears.

I know all the tricks. I breathe. I describe my surroundings in detail. I repeat ‘I’m ok’ over & over & over. I pet my cat; hear his purrs, feel his super soft fur. I plant my feet firmly & watch my toes wriggle on solid ground. I’m here. I’m safe. I’m in this room. And I am. For long enough to switch reels.

I’ve clicked over to a different familiar. My heart is pounding & adrenaline crackles. My body gets there a fraction before the idea fully forms. It’s too late to call halt. The only thing that ever stopped the bloody horror is more blood. Controlled, purposeful blood. I can almost smell the metallic rapids.

No matter how many days, weeks, months go by without splitting my skin the connections remain. My broken brain leaps from trauma to maladaptive solution with confidence. I must convince myself all over again that blood isn’t the answer.

Don’t find that box

Don’t open it

Don’t slip a fresh blade on the handle

Don’t find the perfect spot

Don’t drive the scalpel in

Don’t let blood trickle & flow.

I know this trick too. Sheer force of will. I will not. I can not. I do not.

I have not for so long. I’m ‘recovered’. No one told the deep dark core of me. That fucker still yearns for it. Not every day. Maybe even not all that often, but I know it’s there. I know how fast the urge can rise. And, oh, I know how hard it is to continue saying no.

I can’t say with any certainty that these thoughts will ever completely leave. I’m like an alcoholic who remembers the relief of the first hurried gulp. Knowing that carnage follows is enough to stop me raising the glass. I just don’t think it’ll ever kill impulse.

I’m good. My life goes on. Tomorrow could be wonderful. I’m tired, though. It would be nice not to have to fight so hard.

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A big black hole…

Do you have a voice in your head? Your own personal narrator. Don’t forget your purse, ooh that’s a nice skirt, my head hurts, what should I make for dinner, did I answer that email? I’ll sit down at that next bench…

A running commentary guiding you. Questions, ideas, reminders. Busy, busy always going. An echo of you, so constant that you often aren’t even fully aware of it. Still there when you need it, though. Working through options when you’re not sure which is right. Slowing your tongue before it spits out something stupid. It searches through your memory catalogue and sounds an alarm when you might be missing the danger. It’s useful. A comfortable, familiar accompaniment to life.

Sometimes that voice goes rogue. It’ll bark at the slightest disturbance. You drop a cup & you’re a dickhead. It starts warning off attacks that aren’t coming. Tells you everything you’re doing is wrong. Maybe sometimes you are able to make peace. You both pause, think again and agree that perhaps that assessment was too harsh. Deep breaths or a task accomplished might win the other you over. On other occasions the voice knows its right. All aspects of your life are disastrous and you are entirely to blame. The inner critic skewers you; drives a fresh hole through all your crap.

Black Smokey hold on white background

It takes training to win a battle with yourself. You must master tricky moves to quiet the bitch in your head. There must be people who manage it. I’ve yet to completely get the knack. My internal voice is spiky. She (I) love to find myself at fault. Guilt comes easy and in no proportion to the perceived sin. My head is well versed in all the hurtful language I rail against. Dismissing your own internalised ableism, fat phobia, capitalist propaganda is tougher than talking down some third party arsehole. Anyway, to a certain extent I have accepted that my silent commentary will always do this. I’ve learned to challenge the initial thought. Wrestle it into logical submission. Sometimes I win , sometimes I lose, but I expect the onslaught.

Which brings me to why I’m engaging in this session of blog therapy. Lately, the voice in my head has developed new habits. She has us on perpetual clueless alert. My warning siren is stuck on active. I can’t calm down. However, when I question the need for this hyper vigilance the know it all in my head has zero answers. In fact, I can’t find answers for much at the moment. When I request help my internal dialogue tells me it doesn’t know.

What am I scared of? I don’t know.

What do I need today? I don’t know.

What should I eat? I don’t know.

Who will I pitch this to? I don’t know.

Should I take more painkillers? I don’t know.

Is this good enough? I don’t know.

What do I want? I don’t know.

Did I say the right thing? I don’t know.

Am I ok? I don’t know.

I’ve been anxious & uncertain before. Decision making has always given me trouble. I’ve just never had such a blank in my head. There’s always been a conversation. Typically I’d scroll through all the things in my life that could be a concern. I see it through to the worst possible outcome & decide how I could manage that. Once I’ve tackled that I can be less consumed by the worry. It’s not a perfect solution, but I have some success with it.

At the moment, there is no discussion to be had. This is free floating anxiety ALL THE TIME. I wake up jittery. I lie in bed nervously trying sleep and I am on edge every minute in between. Identifying real worries has no impact. At the end of that process the voice in my head is still shouting panic! I’m not a stranger to unresolved aniexty. I have PTSD, it comes with this territory. I’ve dealt with episodes of hyper vigilance. I do react to triggering stimuli. I’ve been in the depths of unknowable depression. This just feels very different.

The barbed inner voice can usually be relied upon to give me something to work with. Even if my instincts are brutal, I have a jumping off point. Now everything is so vague. I’m stumbling around in a room full of nothing. This isn’t a period of great change. I am not attempting to make life changing decisions. I have no idea what is going on & neither does my brain.

Black & white image of ly looking out over a beach. Taken from behind.

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Watching through my fingers…

I’ve been fairly quiet on the blog front. Clearly we’re all under some pressure, but I’ve also been dealing with some bonus pain. I’ve had episodes of awful symptoms which signal that my pancreas may be acting up again. It’s been a while since I’ve had to deal with pancreatitis and I am scared of a comeback.

The pain triggered some really desperate memories. It also gave me lots of time to ruminate on how PTSD never stops giving me unpleasant surprises. The nature, frequency & severity of my reaction to trauma stimuli is forever changing. In my (also unending) quest to de stigmatise mental illness I thought some recent triggers might be worth sharing.

Waking up in the middle of the night to pee is not a thing that I do except during pregnancy. I’m a hold ‘til morning girl. The frustrating sensation of leaving a comfy bed & stumbling to the toilet in the dark is one I associate with pregnancy. Sitting on the toilet half awake looking at my painted toes I had the trauma version of de javu. My body remembers this. The exact emotion. The precise thoughts. I’m ok, but I know I won’t be getting anymore sleep. I’ll be distracting my head from going back there. Lying still in the dark would be asking to feel things I don’t want to feel.

Sometimes to occupy my mind through those sleepless hours I watch crap tv. Ideally something I don’t have to concentrate on. Mildly entertaining 90’s sitcoms work a treat. That is until the wife in King of Queens is unexpectedly pregnant & then just as they’re getting happy about it, not pregnant anymore. Numb viewing to uncontrollable sobbing in 20mins or less.

A fun park adventure with the rascal is momentarily derailed when someone calls me his Mummy. I smile, correct them & return to my role of bad octopus pirate. I feel the impact, but I look steady. Until much later when the memory of all the babies who’ll never call me Mummy knocks me flat.

I wake up bloody because my period has started in the night. I’m not inconvenienced I’m terrified. Those cramps ripping through my pelvic region signal disaster. It takes a bit of time to centre myself in the now. Repeat, ‘I’m ok’ over and over as I drag myself through a shower. Tampon, comfy clothes, paracetamol. I’m almost calm by the time I return to tackle the bedding. I’m genuinely shocked when the sight of blood on sheets sets me trembling. I was devoting all my attention to not getting sucked into one trauma hole that I forgot about another. I have to sit on the floor but I’m still watching an old iteration of myself. Younger, sicker me is ripping bloody sheets from an entirely different bed. More than the sheets are stained. My body is raw & dripping. I feel as exhausted now, in my healed, safe body as I did then in that recklessly butchered one.

My stupid period tracker with its stupid unwanted alerts. High chance of pregnancy. Such a simple sentence triggers such complex crazy. The stress and hope of trying. The heartbreak of failing. The unwanted reminder of how few of these high chance days may be left. Fleeting recollections of disappointing perfunctory sex and an even more disappointing man. Wearily buying tests. Angrily buying tampons. Wanting the monthly reminder to be over and fearing that end. Wrap it all up in a hollow ache in my middle that never leaves, but echoes as I read those words and you have my condition.

My ridiculous cat managed to injure his paw and now I must try to keep dressings on until it is healed. If you know anything about cats, you’ll know what a challenge this is. I have experimented with various ideas none of which preserved his dressings for long. I started thinking he needs a sock & then remembered I had some baby socks. They must have belonged to one of my nieces or nephews. Baby bits and pieces will end up in your hand bag/pocket after a day of auntying. I seized upon the long lost sock as the solution. I didn’t feel sad or even link the tiny item to anything painful until I started trying to put it on my cat. Then from nowhere I was flooded with too many feelings. I love my boy, he’s wonderful. Still, I couldn’t avoid the fact that he’s the sole recipient of my mothering.

A character in the book I’m reading is trying, with difficulty, to explain why she feels guilty for various past events. I feel as though I have taken a deep breath & inhaled fictional strife. My own twisted guilt is equally hard to comprehend. For me, self reproach is as essential as oxygen. The chord of perplexing guilt could catapult me into a multitude of memories. This time I land flailing in the aftermath of standing up for myself. I can feel the certainty that so recently fizzed go flat. That overwhelming sense of this must somehow be my fault returns. I feel angry about all the shit I put up with, but I still can’t fully convince myself I’m not to blame. Now I’m full of guilt for events long passed. Today is ruined as I attempt to untangle things that never made sense to begin with.

Triggers lurk. Sometimes entirely unexpected things stir up pain. It can be fleeting or set off a chain reaction. I have adapted to a life with booby traps. I often appear untouched, but only because I work so incredibly hard at hiding the mess.

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Word therapy…

On one of my recent insomnia fuelled drives for distraction I stumbled upon an interview that persists in my thoughts. It was Anderson Cooper discussing grief & loss with Stephen Colbert. Both had significant losses early in life. Anderson talked of wishing he had been physically marked by the experience. This is of course a reality I am familiar with. Which led to some slightly self indulgent word therapy.

He talked about how he felt it might be easier to have a permanent sign of the damage so that others may be aware of his condition. An idea I suspect he’d soon realise the error of if he actually did bear a mark of loss. He continued that he thought people should know that he wasn’t necessarily the person he should be. Tragic events had diverted him from the person he started life as. This concept felt lifted from my very own brain. Of course much thinking ensued.

When Anderson talked of being marked he suggested a scar running down his face. His reasoning being that in the wake of his mother’s recent death people had offered condolences, but also shared their experiences of loss. He found this sharing to be comforting and it’s not a thing that generally happens. The scar would show his pain & people would feel able to have those conversations. Colbert agreed in part as he recognised the feeling of his loss being a continual part of his life, whilst the world at large rarely considers it. All sentiments I relate to. I do often struggle with just how often I think of my babies when they’re rarely acknowledged by anyone else. That led me to ask myself questions I had thought settled.

I understand their reasoning, my experience just doesn’t bear it out. The look of my self harm was never a factor I gave much thought. Outside of the need to hide it from others, the visual of impact was a non issue. I never cared. Ugly scars were just a by product of a necessary thing. The pain & blood & release & expiation were essential. If mutilation was a consequence of that so be it. I don’t think it occurred to me that I had another option. Yet, now, clothed in the aftermath it does seem fitting.

If I could exclude third party reaction it would make sense. I can see a twisted symmetry in my flesh being ravaged, but still living. At my core that’s how I feel. I contributed to my destruction and then I toiled to repair the ruin. Of course, you can’t escape the opinions of others. Those who care about you are hurt by the reminder of your pain. Those who don’t know you are as often cruel as kind. Carrying your story everywhere is a complicated matter. Anderson might end up preferring the anonymity of a metaphorical scar.

The second part is harder to reason. For a very long time I wanted nothing more than to be the person I was before. It took me years to accept that wasn’t possible & several more to realise that wasn’t my fault. I still missed that fun, capable, handle it all girl. Still wondered what she may have become, but I didn’t hate the me that life had created anymore. Little by little I learned to like myself. I started to believe that might be able to take all the broken pieces & make something beautiful.

The universe had other ideas. It really does enjoy smashing me up. Each time I lost a bit making a whole seemed less & less likely. Now that I know for sure how unlikely, those other mes feel important again. I keep thinking about who I could have been. Which variation of myself was I supposed to be?

I can’t help but imagine that original version of myself would have made a shinier, happier life. That 19yr old was a powerful force. She’d have been unstoppable at forty. Even if I’d sustained the original hit there all there a still multiple variants. All these possible lys that could have existed if you subtract chips along the way. Sure, that could probably be said for anyone; I just don’t know if everyone can so clearly identify the points of impact. It makes it easier to compare the before & after.

I had made peace with the person I am. I don’t reject her now. The what if’s have simply grown louder. There could have been so much more. In the end I don’t care about the scars. I’d even take Cooper’s imagined facial disfigurement if it gave me a chance at one of those parallel lives. The older I get, the more certain I become; I want the more.

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My sign is vital, my hands are cold…

CW: Self Harm

Lately I’ve been having regular checks for the heart rate thing. The nurse who took my blood & vitals last week was really familiar. I had that strange I’ve definitely met you feeling, but also knew I didn’t know her, know her. I couldn’t place her at all until a loud clatter startled her. Her sharp intake of breathe shot me back in time.

She was the nurse I stunned with my self destruction in this same hospital many years ago. She either didn’t recognise me or correctly judged it best not to indicate that she had. She was friendly & kind, but the sound of that inhale shook me. I was back there, covered in blood & guilt.

I can so clearly remember walking into that triage room. Concisely explaining why I was there & seeing the doubt in her eyes. I could tell she thought the large towel on my arm was overkill. I knew she was weighing up how to nicely dismiss me. I was too tired to do anything other than unwrap the makeshift dressing & expose the truth.

Foggy picture of cars outside hospital. Words ambulance only painted on ground

The inner layers were blood soaked & the final one stuck to the wound. When I yanked it off with same the lack of self care that had led me to that room, she gasped. An entirely involuntary expression of what; shock? disgust? fear? I couldn’t discern, but I knew it wasn’t good.

The speed that she whipped through the triage routine was more about her discomfort than mine. I had long lost my objectivity. I sought treatment as a means of calling a halt to that cut. I had given up seeking enough. I knew that enough was a lie. When I looked at my arm I really couldn’t tell anymore if it was any worse than anything else I had done to myself. It was just another failed attempt to carve out some peace.

Peace that I knew was never coming. I already felt stupid & ashamed & so horribly guilty. For all the usual reasons and now also because it was obvious I had ruined this women’s night. She hadn’t bargained for my level of determined self loathing; I’d upset her. I felt selfish for not being more clear. I shouldn’t have allowed anyone to be caught off guard.

I wanted to be better. Do better. I wished I could give this nurse & everyone else the explanation they needed. I yearned to be somewhere else. I didn’t even want to do this anymore. My blades had long since lost efficacy. I could never cut deep enough. Never shed enough blood. The quiet I needed was evermore elusive. I was desperate and so fucking tired. Yet, I still couldn’t stop.

As I waited for her to finish with my blood pressure I was stuck in the past. Mired in the dread. Reliving the experience of having my arm stapled shut whilst already planning the next assault. Knowing I couldn’t escape the nagging voice in my head that insisted I must cut. I must earn any rest. I had to atone for sins I wasn’t able to articulate. I had to release all the fetid emotion with my blood.

When I left I felt blessed. And cursed. Blessed that I was wrong. I did escape. I have hushed that internal need for penance. Cursed because I still haven’t silenced it. There will always be triggers pulling me back. Days when my scars itch to be opened. You can’t play with fire & not get burned. The magic is remembering I know how to make it stop. I just have to wake up every day and choose this new, better life. Easy, right?

Black and white photo oh plus size woman looking at scarred arm

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When will they stop…

I used a hand sanitiser in a train station the other day. It was one of those super strong types that you find in hospitals. As soon as it hit my skin I was whisked back in time. For a second or two I was somewhere else. Somewhere I didn’t want to be.

The cold sensation drifted through my body. A zoetrope of mixed up images spun in my head. Blurry flashes conjured by the clinical scent. I felt dizzy. I sat down, took some deep breaths. It passed. I was grateful.

Blurry spinning image of trees & sky

It wasn’t entirely gone. That night the whirl of disjointed scenes dipped in & out of my dreams. Random words have jarred memories. My mind has wandered mid thought or conversation. I have felt the panic rising. Spells of forcing my head to connect with my physical reality have emerged. Struggling to focus on what I can actually see, hear, smell in this moment. Ignoring the feelings climbing my throat.

Tonight in the shower I couldn’t shake the feeling that the hot water streaming down my legs was blood. I couldn’t wipe the hospital aroma from my nostrils. Nor soothe the ache that spread from my back to my thighs. The hand sanitiser has triggered a reaction. My body is recalling the trauma stored deep within. It’s a phenomenon associated with PTSD known as body memories.

I haven’t experienced this symptom in quite some time. It lies dormant; rising unpredictably. Sometimes reacting to obvious & painful stimuli. Or, like this week, triggered by a tiny insignificant detail. My olfactory senses seem particularly attuned to old wounds.

New born baby feet with words birth trauma Association

This time it’s the initial loss. I feel my body failing. I know it isn’t happening. I have learned how to pull myself back to the here & now. Still, those moments when I’m dragged to the past feel completely real. I am not just thinking about unpleasant events. I am feeling them. My flesh & nerves & senses are reacting to something that happened 20 years ago.

Body memories are excruciating. It becomes a battle between what you know & what you feel. Fighting strong emotions is a challenge. When you add physical sensations grounding yourself is an onerous task. I have experienced these episodes replicating the sensations I felt during miscarriages & pregnancy. At times these physical memories are accompanied by flashbacks & other PTSD symptoms. Other times they occur in isolation. They mirror my actual experience so completely that I’ve found myself taking multiple pregnancy tests when I knew it was almost impossible for me to have conceived.

Sands logo

It’s another aspect of PTSD that I rarely see discussed in the mainstream. Post Traumatic Stress Disorder is not only (or even mainly) associated with combat trauma. Yet, it’s the link most people draw. The violent outbursts in media portrayals of the illness are not accurate. New studies are highlighting how prevalent PTSD is in women who have experienced baby loss & birth trauma. For most of us, managing PTSD is an internal process. Distress may leak out, but the grind is with yourself. Accessing the right help, surviving that help (trauma therapy can be brutal), learning to manage symptoms, accepting the parts you can never fix & the impact they will have on your life.

It’s painful & exhausting & many of us never completely recover. To stand any chance of healing specialised therapy is essential. There are so many barriers to reaching that help. It can take years to obtain any psychological intervention without the resources to pay privately. Even longer to receive the specialised therapy that can actually help. So many people can’t afford to wait.

This month I’m supporting The Birth Trauma Association and Sands. Both organisations support families who have experienced trauma surrounding baby loss & birth. Please join me if you can.