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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If only I could hold you…

Dear Baby,

Today came around very fast this year. It frightens me how much time has past. You’d be older than I was when I carried you now. That feels incomprehensible. All those missed years. A grown man’s worth of memories. I can picture you at every age. Yet, I still call you baby.

We’re trapped together in this restless limbo. I hope it’s easier on your side. I dream of you kicking. Always the same sensation. Never the same place. We’ve travelled my emotional map together. You have been everywhere that ever really mattered. I wish I could give you more than words & dreams. I’m sorry I couldn’t save you.

Love always,

Mum

Xxx

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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Little Green, have a happy ending…

It recently came to my attention that Joni Mitchell’s masterpiece, Blue is 50 years old. I find it incredible that words written half a century ago still cut right to the heart of me. I discovered Joni when I was around 12 and 28 years later I still love slipping into the blue. This week I have found myself listening to one song in particular on repeat. It’s Baby Loss Awareness week, as I see others share their own losses I find comfort in Little Green.

Little Green is perhaps the most perfect song ever written. I didn’t know precisely what it was about on first listen but I still got it. It still wrapped me in it’s magical sadness & hope. Green immediately struck me as a beautiful name for a girl. I decided there & then that should I birth a girl, I would indeed call her Green.

Little green by Joni Mitchell lyrics in background on green ribbon

I’ve been listening to that song since my teens. Dreaming of the tiny bud who would be my Green. In the passing years I have learned the true meaning of the song, talked to the Green nestled inside me & discovered the reality of loss. Joni was writing about a different, but similar grief. Her words remain entwined with my experiences.

When I dream of a daughter she is a gypsy dancer. All tangled red hair & high spirits. She likes the scent of pine trees & bracing herself against a strong, cold wind. She’s quieter than me, but chatters when excited. I read her everything I loved as a child. Take her to the places that made me feel big things. Her childhood is filled with standing stones & patterned tights & Joan Lingard books & seaside air & empowering women & red liquorice. She is exhausting, exhilarating & exquisite.

When I wake she is a girl in a song. A fantasy my mind summoned; fuelled by 70’s folk poetry and my deepest longing. Listening now is a sweet agony. Pressing my sorest spot because I can’t resist the beauty of it all. The intro wrapping me in the blanket my babies never had. The lyrics bringing the sketches in my head to life.

I’m glad we’re beginning to open up about pregnancy & baby loss. I hope others won’t have to spend so much time alone in their heads with their babies. It helps to talk about losses. To give solidity to those tiny unlived lives. It is such an enormous relief to have the world acknowledge our children.

Adult hand holding a child’s hand on green background

On the inside…

Dear Son,

It’s been another insane blur of year. The pandemic has given me lots of time & motivation to do big picture thinking. There’s been so much talk of the impact on parents & kids. The decisions to be made about keeping children safe, healthy & happy get trickier in times like this. You’re not here. Neither are your siblings. Being forced to stay home alone for extended periods really rams that fact home. I still think about what I would do. How I would make sure my children would be ok. I don’t think that will ever stop. I’ve thought through how I’d handle every stage of your lives; agonised over choices that are entirely theoretical. I can’t help it. I’m always going to be your Mum on the inside.

This year I will be spending your day doing something joyful. It came about purely by chance. Pandemic rescheduling dropped an activity unexpectedly. It feels strange. It’s not a thing I would have planned, but I think it is good. I’m trying to see it as a celebration of you. Of the tiny amount of time we had & all the wonderful that could have been. I know you would have given me so much to rejoice in.

Love Always,

Mum

Xxx

Nothing is like it was…

This month’s insomnia has been sponsored by infertility. My inability to reproduce occupies far to much space in my head & life. A big problem with healing from pregnancy loss is how taboo the topic remains. Things have improved a little, but on the whole I still feel like most people do not want to hear about it. Some have very valid reasons to shy away from those conversations. Others merely feel uncomfortable. Rightly or wrongly that leads me (& others) to feel we must keep it to ourselves.

Obviously I have attempted to combat the silence both in my writing & my life. I know it helps those who have lost & those around us to be more open. My own attempts to get on with it quietly were incredibly harmful to me. Still, there is so much that I have not shared. There are important people in my life that I’ve never spoken about my miscarriages or infertility with. It’s not a secret, but many things have prevented me from feeling able to discuss how I have felt.

Beyond emotion there are so many details that aren’t revealed. Common place aspects of miscarriage that are only ever referred to in hushed tones by those who have been there. There are various behaviours that I kept to myself because I feared they veered towards crazy. I’ve subsequently discovered they’re common rituals. Humans find comfort where they can, it would have been less frightening to know I was normal.

Most of all, the secrets are weighty. I feel laden with the obligation to keep the unmentionables shrouded. I don’t want to feel this way anymore. I definitely don’t want others strapping on this load. I need to let some of it go.

I say some, because, there are people & realities I cannot change. Crashing against solid stone will bring me no comfort. Thus, I want to reveal the parts that I can with this kind & ultimately faceless audience. Hopefully it can help others who feel burdened by conventional decorum. At the very least I may finally feel lighter.

I fear you’ll judge the box I’ve kept for 20 years. Adding items that others have hinted should not have been saved. Very few know it exists, the suggestion that it shouldn’t have has always hurt. I don’t think the positive tests from each pregnancy are gross. I’ve still felt the needed to hide them. Saving hospital bands & paperwork makes sense to me. I don’t understand why wanting to hold onto something (anything) connected to my children is morbid. I’ve been assured it is.

Positive pregnancy tests
Document requesting blood pregnancy test

I’m embarrassed of the few new born pieces I dared to purchase. So often I’ve seen childless women with tiny socks stashed in a drawer portrayed as lunatics. Dangerous, even. The type who might steal your baby. I hide the pregnancy, early years & baby names book. They’re packed away with the baby grow I saved from my niece’s early days. I thought one day I could frame pictures of them both babies identically clothed. Yes, the frame that would have housed those photos remains box fresh alongside. I have no need for this paraphernalia, I just can’t bear to throw them away. I worry this will be viewed as pathetic. Another crazy lady whose biological clock went bang. They were logical purchases when I made them. I was pregnant. When those pregnancies failed I was certain the next one wouldn’t.

I’ve never shared the pictures I took when my stomach started to change shape during my last pregnancy. I wanted to show off that development, but I didn’t think I was allowed. At the time it would have been tempting fate. Afterwards, there is instant unease if the subject is approached.

ly is wearing a red dress and taking a side on mirror selfie

Then there are the memories that will never leave and are never uttered. Unpleasant shards of the mess no one wants to witness. The exact tone a nurse used when she told me it was for the best because I was so young. Or the ice cold that runs through me everytime I see an examination table with stirrups. The fact that a miscarriage is more than blood and that more must be dealt with. I don’t talk about sitting alone in my bathroom trying to decide what to do with the bloody fragments of the child that will never be. Or the torture of bleeding a little & then having to wait. Clinging to hope through blood tests and scans. Only to be told you’re technically still pregnant, but it’s no longer viable.

Risk of infection, prolonged bleeding, the extent of the pain are all things I only become aware of through experience or via other women in private groups. We’re all so squeamish about the reality of pregnancy loss. I think it’s entwined with the patriarchal disgust of ‘female’ bodily functions. The same whiff of shame hangs over the process. I have felt I must not reveal anything too corporeal. Almost as though declaring the facts of my physical condition is gratuitous. Likewise, I have restrained aspects of emotional responses for the comfort others. It simply isn’t sensible to treat such a traumatic event with polite moderation. The inhibition has damaged me.

The older I get the more I seek clarity. Much of the pressure that society brings to bear obscures my view. I don’t want to submit to it anymore.

Pale white feet standing in Loch with pebbles

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The best of me…

Dear Baby,

Today would be your 20th birthday. I’ve had the time it would have taken for you to become a man & still the wound is raw. It seems that a certain amount of pain will always be part of being an invisible Mum. I miss you and all your siblings. Even though I never got to make real memories, I hold our phantom family in my imagination.

My life will always be less for your absence, but I’d never forgo the time that I carried you. You will forever be the very best part of me.

Love always,

Mum.

The September Issue…

Autumn has always been my favourite season. The drawing in of the nights & cooling of the air used to be welcome. These days this time of year is more complicated.

All of my babies were due in August or September. As the weather changes I am beset with anniversaries and reminders. People who were pregnant with me throw birthday parties. I quietly mark dates I had hoped to celebrate.

This year my orbit is congested with pregnancy announcements creating a perfect storm of emotion. All are depressingly familiar. I’m sad and lost. I don’t know how to find a purpose big enough to fill up my life. Each time I begin to believe I’m approaching acceptance I’m overtaken with this stale grief.

It’s so heavy and I’m so tired of dragging it around. I want to be able to move past this, but there are too many ghosts. A million tiny pricks. Triggers lurk everywhere; always something to yearn for. Even in my happiest moments I’m aware of what’s missing.

I can’t comprehend ever making this ok. Yet, I don’t wan’t to be this tragic old bitch. I’d like to stick all my consolation prizes together & collage myself a happy enough ending. I’m scared I’m not sufficiently good/strong/grateful to make do & mend.

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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.

I miss you like sleep…

Too much time in my head is distinctly bad for me. Not getting stuck amongst all the crap i’ve crammed up there is an ongoing project. It is not an endeavour that is aided by inaction.

Staying home alone all day, everyday is not ideal. I require distraction. I need people who make me feel swell and to do things that help me feel worthy. I like knowing that I could jump in a taxi and go anywhere. Having a sense of control is massively important.

Being entirely reliant on others for almost everything makes my insides jitter. I feel more of a burden than ever. Which activates my guilt & anxiety. I’m obviously also worried about myself or someone I love getting ill. Plus the horror of all the people who are suffering & dying every day. I’m basically a big ball of negative emotions.

I’m struggling with pain. I miss my little ones. I miss all my people. I can hardly sleep. There’s very little work. There’s too much time to think. All this on my own time thinking about what I miss inevitably highlights the major omission.

When left to its own devices my is brain predictable. It clings to trauma. If not occupied with the business of living, I regress. Slip back into dreams of the births I’ll never labour through. Flashbacks of the blood & pain I did. Haunted by the over used phrase that always signaled it was over.

There are so many what ifs. Too many of my own actions to question. Huge & tiny alterations that could have changed the outcome. Things I never said. Words others can never unsay. Blame to place. Regret to carry. Penance to complete.

I feel trapped with all I’ve lost and every little thing I can’t share. The good memories are as painful as the bad. The selfies I took when my belly began to change shape. That magical second line on the test. Marking midwife appointments on my calendar. Blood tests with the right numbers. Making lists. Checking what ridiculous object the app tells me my baby is now the size of. Plans & scans & the bam bam of heartbeats.

Rainbow reflection on pale either arm

My body remembers it all in such intricate detail. I recall the fractionally altered taste of mint tea. Sex felt different and the smell of everything intensified. I was heavy with fear. Dulled by fatigue. Yet still floating on hope and entirely delighted to experience whatever this new life threw at me.

It never goes away. I can never take my foot off the pedal. I’m always close to skidding off the road. Lockdown is like a battle not to drift to sleep at the wheel. Spending too long contemplating my past or the what might have been is dangerous. Finding ways to keep my eyes open is getting harder.

Two lines to indicate positive result on pregnancy test

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