2020: The year everything changed

The year the world stopped, restarted, stopped…

The year so many were affected by the virus directly or indirectly

The year we couldn’t travel, see our friends and family or hug.

The year we had to learn new ways to interact whilst attempting to keep sane.

When I celebrated the end of one decade and the start of another on New Year’s Eve 2019 I, like many others, reflected on what the last 10 years had brought me and thought a little about where the next 10 may take me.

Pretty sure no one thought this would happen. I probabaly wasn’t the only one that thought it would just blow over, die off and we would be back to normal quickly.

Yeah, that didn’t happen.

Like many others that live and work abroad, my first thought in early March was, I think I need to get home. I was scared if the borders closed I would be stuck feeling very alone, and feeling very much the 2000 miles away from home and my partner that I am, and wishing I was there.

I hurriedly packed up some things thinking I would likely just be a few weeks in the UK and not the nearly 5 months that it ended up being.

Within a week of being back the UK was in lockdown. Everything was restricted and everyone was told to stay home and stay safe. Suddenly all those virus related disaster movies seemed a little more real. The virus and it’s impact seemed more real.

Despite all the surrealness of the situation, the tears, the worry, wondering if I will ever get back to Norway again, lockdown has also brought a lot of joy, productivity and optimism.

I’ve had time to learn about me, that it’s ok to get up and walk away from your computer and take time for you. That it is absolutely ok to not sit on BBC news each day and depress myself about the state of our country and the situation and more importantly that I shouldn’t beat myself up about stuff I can’t control.

I’ve learnt it’s ok if things don’t happen immediately (even when I want them to) and that despite everything, quite frankly, there are often far more important things to worry about than if I can get any dried pasta that day or not.

I’m being flippant I realise but it’s TRUE in so many ways we get so hung up on small things that we can miss the bigger picture.  

I have learnt to embrace life as it comes. Worrying about the future is something we have all done, and something I promised myself I would not do again, but it is so easy to fall into that when stuck in a challenging situation. Yet it is so exhausting too.

At the same time lockdown brings with it not just the fear and sadness but the loss of social interaction. Other than delivery drivers I didn’t see anyone else other than my boyfriend, and the locals also doing the same route around the field every day, for at least 3 months…except virtually.

Being alone with your thoughts, your vulnerabilities, can make you feel even more isolated than before so I wrote my thoughts down and I picked up the phone and I joined in the zooms and I interacted with my family, friends and the MRKH community.

In a community as large as ours there are other ways to connect and share and lockdown it has brought the community together to provide support, friendship and comfort in a way not really done before. In turn highlighting the value of online tools as a resource, pandemic or not.

Lockdown has given us time to work on the Charity, our website and social media. It’s given me the chance to ‘meet’ people I have spoken to for years and never really thought to pick up the phone to chat to, as well as meeting new faces and finding a connection and opportunity. Supporting each other. What an empowered and strong community we have that I am so proud to be part of.

It has brought with it joy and fun and laughter through crazy lockdown initiatives that have had us gin tasting, gin blogging, bread making, virtual afternoon tea-ing, food exploring, cocktail making, workshopping, online board gaming and pub quizzing.

Working from home has been productive and the lack of commute (even though it wasn’t long) has given more time for me and the things I enjoy. I know people enjoy office time, and certainly for my company this is very important, but the flexibility of working at home and in another country was so welcomed and something I am so grateful for the chance to do.

I have run more, home exercised more (thanks YouTube) and spent quality time with my boyfriend who I usually only see on weekend trips back to the UK and extended holidays.

I long for the days of proper hugs again. For meet ups that can be spontaneous rather than requiring booking just to have a beer in the pub and to travel again for real rather than just dream about it. But maybe even more so, I hope us as a society can learn from this whole situation and make improvements to all our communities in a positive way.

I travelled back to Norway 2 weeks ago as restrictions had eased and travel was more possible. I think it will be a while before I travel as flexibly and often as I did before but the main thing is I am safe, happy and my partner is with me.

We will always have ways to connect and whilst it is not the same it has never been easier to do.

Some day we will describe this time to the next generation and I feel fairly sure they won’t believe it actually happened.

But it did.

We are living a new ‘normal’ and we may never get exactly back to how it was before. Whilst I know our situations vary drastically both personally and in different countries it may not necessarily be a bad thing if they don’t. I am grateful for this weird crazy surreal time in so many ways and learning the balance of work, connecting and time for me yet can’t wait for the time we all can feel a little less restricted and confined and overall safer.

Love to all in these ever difficult and continuously changing times

This is me

As I continue to be inspired by the experiences shared through MRKH Connect’s #letsconnect campaign and the wealth of positivity that comes out of something so difficult. It’s given me a chance to reflect.

Reflect on my own experiences

Reflect on how I got to where I am now and how despite it not being an easy journey, as it isn’t for any of us, its had such a profoundly positive impact on my life.

I was diagnosed at 17 after about 6 months ish of tests and that was already after being advised by my GP to wait a year to see if periods started naturally. They didn’t, and of course wouldn’t, because of MRKH. Whilst it seems like a long time its relatively fast in comparison to many.

I remember that day of diagnosis as clearly as if it was yesterday and not the reality of it being nearly 20 years ago. I remember being in the hospital laughing with the anaesthetist, the pain following the laparoscopy and then waiting AGES for the doctor to come back to tell me what they had found. We weren’t stupid. We knew by then there was for sure something not right but we just didn’t know what.

I just remember wanting to get out of there as quickly as possible.

That first year following diagnosis was weird. I felt weird but I couldn’t explain it. I felt sad but I couldn’t process it. I was angry but didn’t know what to do with it. I can look back now and recognise these things that weren’t so obvious to me at the time.

About 9/10 months after being diagnosed, in my final year of school, I decided to start dilation. I was in the specialist hospital in London learning how to dilate during the Easter holidays of 2002 whilst revising for my A-Levels. It was a very surreal experience. I could not imagine then that I would meet a friend for life.

The first person I ever met with MRKH was in the room next to me doing the same thing. Nearly 20 years on our friendship has grown and whilst we would likely never have met without both having MRKH I could not imagine not having her in my life. That was the first turning point. A point when I suddenly realised I was not alone, and that whilst we felt alone we had each other.

By the time I went to University in 2002 I had told some people some things, I had drunkenly told others something different and I felt at that point I was ‘dealing’ with it. But University, like any change of life, was a step change for me, for the better but for the worse too. I can look back now and know I struggled to deal with my emotions and mental health as I know lots of my friends did. It was not isolated to MRKH.

At the time though I didn’t see myself much differently to those around me. we all had our own challenges yet I was finding myself not being able to move forward. It still wasn’t until much later that I realised the profound psychological impact of a condition like MRKH, more so than the physiological effects in many ways (for me at least).

I started seeing a psychologist but found it hard to maintain regular meetings in London whilst at University in Reading. I can’t even remember now what I even spoke about in those sessions specifically but at the time at least I didn’t find it as helpful as I hoped. I hadn’t quite given myself the chance to let go.

Things changed at the end of my first year. Those feelings that I had tried to brush away were exposed further as I learnt the tragic news that one of my close friends had died on his motorbike after being hit by a drunk driver.

Phil was very special to me, and always will be. He provided support and comfort in a compassionate way that I only got from a few at the time. Largely because I was only truly open with a few close friends. I remember him coming to my house the day after I was diagnosed. I didn’t ask him to but he wanted to see if I was ok. He had no idea why I was in hospital only that it was for something important and personal. He never asked me to tell him yet I found myself sharing what it was and what it all meant anyway. I hadn’t really got my head around it all so it came out like a jumble of words and what I am sure was a ‘too much information’ moment yet he was calm, collected and comforting.

To lose him was devastating.

I look back on it now and it seems like that time was like a really bad dream. Everything then seemed to merge together. My University life was this crazy escapism life in comparison to my home life in the holidays. The fun of university (and it really was) was coupled with the clear sadness I was feeling but just not acknowledging and the ‘coping’ mechanisms I was choosing were, well, not helpful at all.

I finished University and got a job, did some travelling, did a Masters and found myself in a profession I could never have imagined. Interpreting satellite imagery. I went to university to do Geography with the end goal of becoming a teacher. I didn’t even know before University satellites collected anything other than weather data but became fascinated by the concept and it drew me into a completely different career than I had ever imagined.

By this point I didn’t talk so much about MRKH but I didn’t not either. Dilation had been and gone. I was not concerned by that anymore and in fact, apart from being a little embarrassed about it at the time (and the fact it really hurt!), I did share details of it with a few select friends too.

I just wanted to get on with life but there was something still nagging at me.

It wasn’t until a later that I would realise that this pain I was feeling was grief. Grief for a child I wouldn’t ever carry and perhaps a child I would never have. So to see friends get pregnant and have children, not always easily I might add, just compounded this. I sought therapy twice during my twenties to try and get myself in a position of a level of acceptance that would show me some light at the end of this tunnel.

I explored IVF surrogacy with my long term partner and it didn’t work out for so many reasons and in the end was a culmination that ended a 9 year relationship with someone I had shared so much with. Another sadness. Another step back (it felt) and any ideals on a family now seemed, in my early 30s to be drifting on a path far far away.

The most poignant of my counselling sets would come after this period. Finally a realisation, a sharing of emotion and experience that I hadn’t done before. I was ready to let go and bare all and it felt good, well bad but necessary.

It gave me a new perspective. A new focus. Some new tools and I finally realised at that moment that things were going to be ok. It wasn’t going to be easy but I slowly came to terms with that and realised that things happen for a reason.

I now, more so than ever, really had made progress to understand these feelings and this sorrow and recognise that was all part of the stages of grief that I had been bottling up and battling with for the years previous, often without even realising. It had just become natural to suppress it.

For years I had been embarrassed about admitting I was going to see a counsellor. Worried about the stigma in admitting that I was not strong enough to handle this myself.

This is totally the wrong attitude.

Strength comes from recognising and then asking for help. Admitting you need it is not a weakness at all. Admitting you need support at different stages of life is also nothing to be ashamed of.

However you seek help, professionally, support groups, friends and family or other, never feel embarrassed. During our current situation, more than ever, awareness of mental health has never been so important.

There is support out there and I for one am so pleased to have found that both from the strong empowered community we have, my friends, family and from a psychologist. When you find it, it really is something so special.

I am always here for those who need a chat, a moan, a cry or anything. No question is stupid, no thought needs to be embarrassing. I am open and willing to share, support, (socially distanced) hug or whatever is needed.

Positivity can come out of something negative and I for one would not change the experiences I have had, good and bad. It has led me to where I am today, the boyfriend I have and the happiness that has brought with it. Sure, sometimes there are still bad days but this is natural and it is ok to not always be ok, to need to take a breath, to escape a bit and to have a little cry.

MRKH has had a profound impact and has made me into the person I am today. Sounds silly to say but I actually wouldn’t change it.

This is me

You are not alone

xx

Roots to Grow

It’s not often that I get to combine any part of my work with MRKH. But I was inspired by an exercise I recently did which considers our bodies as rooted trees. All the way from our feet to our head and through our mind.

So with that in mind I thought I would incorporate one of my favourite satellite images into the blog as it has always reminded me of a tree.

Each part of our bodies tell a story. They show a connection between us to memories, experiences and emotions.

I am not body unconfident as such yet like most of us there are parts I don’t like. When I think about my body as a whole I automatically think of the negatives but when I write down those instant reactions to different parts of my body, from my toes to the top of my head, a lot of them are positive.

My feet are my foundations. They are grounded. They connect me with others. Foundations make me think of family and friends. But they are ugly as hell and covered in dry skin. They remind me of constantly tripping over my feet as a kid (and also as an adult). Yet without them I wouldn’t be able to run, to walk and do all these other crazy challenges I set myself in the way I enjoy now.

My legs are strong, providing support. But they are not flexible (those days are well and truly gone). My knees are covered in scars the most recent of which happened by tripping over the same tree root, whilst running, a few months apart.

My hips are wide. I don’t like them but also provide shape that I like to embrace, sometimes.

My core makes me uncomfortable at times. I think of what having MRKH means, I sometimes might give myself a break on a cheat day then feel bad about it the next day yet at the same time thinking how strong my core is becoming and how life is too short not to enjoy it!

My upper body, shoulders and arms show terrible posture and lack strength in some aspects yet have strength in other ways. I can’t do a proper push up but who cares, I can hug.

My face shows openness with wide eyes and a dimpled smile yet has in the past hidden true feelings through a worry of giving something away. It can look weary but it is also expressive.

My mind is content…mainly (I mean come on we all have bad days). But in general its strong but frayed at times. Its passionate, ambitious with a jumble of fears and wonderful memories. It’s grown strong.

My body has its flaws perceived or otherwise but I am not defined by anything. Nothing and no one has the right to make me feel bad about myself. My MRKH Is part of me but it doesn’t bully me. It doesn’t need to be loud it doesn’t need to be in my face but I know it’s there. It doesn’t always need my attention, it doesn’t help either of us.

By embracing it I can be stronger, learning from my experiences to be more positive and bring more positivity to others. It doesn’t have the same bearing as it did, I don’t feel embarrassed by it. I have become accepting of it, familiar with it, to a point of comfort. That’s where I want it to say.

There is always room for growth. At whatever age.

If I was an actual tree I think I would be a Horse Chestnut, I have always liked conkers 🙂

Charlie xx

Landsat ETM+ July 2000 ©NASA/USGS processed by C. Bishop

Dear Courage, Dear Fear

Dear Courage,

I don’t know how to process these feelings. I don’t know what this means for me and my future. How will people react? Am I a freak? I’m scared. I feel like this is all new and it wasn’t supposed to be like this.

I was supposed to be like everyone else.

I don’t have anyone to talk to and I feel embarrassed speaking to my family and friends but I feel I need to let it out but what do I say and how do I say it?

I don’t know how different I really am or how to feel about it. Is it weird that I don’t know how to react?

I just want to feel normal. I don’t want to feel like I am losing control but I feel like I might be.

Please help me Courage.

Thanks,

Fear xx


Dear Fear,

Thanks for writing.

First, it’s going to be ok.

I know it doesn’t seem like it right now perhaps but hang in there. Don’t let your head run away with itself. don’t let yourself think too far ahead and worry about something that you really have no need to right now. The future will come and we can think about that then.

It does feel a bit scary and it will for a while but you have to take this step by step to make it easier to process, easier to manage. It doesn’t all have to happen at once.

Never be scared or embarrassed to ask for help. It doesn’t make you weak, it actually makes you strong as you are acknowledging how you feel and that you need support.

Don’t forget that it will get better but it starts with you. You can make this happen. You do know how, it’s inside you, just take a breath. Relax and think clearly. You are going to have to be a little patient with this, there is no quick fix.

But in many ways you don’t want to be like everyone else, that’s boring. You want to be you, and YOU are unique. There is no ‘normal’ there is just our own expectations. You have so much you can achieve don’t let this limit you, it doesn’t need to.

We didn’t know this was going to happen but do you know what? we are going to find a way through those ups and downs together.

Stay strong, I am always here

Courage xx

This is me aged 17 newly diagnosed (Fear) vs me last year aged 35 (Courage) taking the leap to move to the Arctic circle

This was written as part of an ‘Open Type Night’ writing workshop focused on how we express our feelings, emotions and fears privately to ourselves and publicly if we wish. As the charity I work with is in the midst of its own campaign to raise awareness it felt like a great time to share this. I’ve learnt so much in the 18 years since diagnosis and I would hasten to add that aside from the negative effects of MRKH I have found so much positivity and strength. Who knows where I would be if I didn’t have it but having a challenge to face was one that I have tried to embrace and personally have now find a happiness and comfort in that at 17 I never thought would be possible.

The Positive Stress Test

Anyone else feel like we are living in some surreal reality right now? I remember always being told as a kid not to be scared of films because they aren’t real (ok of course the true story ones are at least based on something real) yet as I sit here inside, on lockdown, isolating, social distancing and all the rest of this new ‘normal’ we are adjusting to I can’t help but think i’m cast in Contagion – not a true story, excellent book and pretty good film. Probably don’t watch it right now.

Not only that but I turn on Netflix and it has not escaped my attention of their ironic placement of films such as Contagion, Pandemic and others as a ‘Must see’.

The C word (also known as ‘the-virus-that-shall-not-be-named’) is causing a bit of upsidedness right now. We don’t make plans anymore, diaries are blank and the upcoming bank holidays don’t have the same element of relief and enjoyment as they usually do. The highlight of the week might be a Zoom with your friends/family or a virtual quiz. Turns out even in isolation I’m still crap at quizzes, however come to me for random facts as those ones I seem to have locked down (no pun intended).

2020 was going to be the year. Not necessarily sure for what exactly at least from my side but the start of a new decade brings with it a sense of reflection, change and making some new, perhaps more realistic goals than the ones you set in 2010. Currently 2020 is on pause and much of it is ‘cancelled’.

But after starting excitedly we seem to be on some terrifying roller coaster like Stealth (fastest roller coaster in the UK, if you are interested) careering towards, what feels like a very unclear future whilst desperately screaming ‘when will it end’.

It is not easy to adapt to this new way of life and I am grateful to be able to be with my partner during this time after now being rather happily stuck in the UK with him. The supermarkets now resemble a set from Supermarket Sweep and it says a lot about so many nations that our go to during this time, now making them a rare antiquity, is toilet roll along with pasta, rice and all tinned vegetables. If you are where I am you are additionally purchasing ALL of the wine, beer and crisps and chocolate.

For once at this time of year Easter Eggs are not sold out!

As I sit here wondering a little what will happen next as us very social beings are being forced into anti social behaviour, for our own safety, the profound impact that has on the mind (and body) should not be forgotten.

Whilst I am trying to make light of our situation for my own sanity as much as anything , this is also serious. Mental health issues are not something that just happen to some people. They happen to everyone its just the way we manage that and can recognise it thats important.

Hands up if you have had a little cry during this period already? It just gets a bit overwhelming right and the uncertainty is what can make it worse?

Acknowledging that its ok to not be ok is the first thing. Then why not pick up the phone (I know its crazy but remember when we used to just phone people and not text them?!) speak or video chat with someone. You could talk about rubbish and just that interaction could instantly have a positive effect.

I just bought myself some wine online (since ALL of the wine has been purchased it feels like in the supermarkets) and not joking, I added a gift message from myself to myself. It made me laugh as soon as I saw it.

Little things, sometimes thats all it takes!

I am moved by all the video clips and posts hailing our wonderful NHS as well as those of our elderly and vulnerable still finding ways to enjoy their time in isolation through song and dance and games. Finding joy in a crisis and a sense of community. So heartwarming.

There really are so many resources out there for support during this time. Whatever you might be looking for. Maybe its the virtual gyms (incl for kids), mindfulness, support groups and seminars switched online. Some of them have been there for a while but now it seems so much more prolific in a world where physical social interaction is now limited.

I know so many are struggling right now as medical procedures and fertility treatments are put on hold or cancelled so it is ever more important to find those different coping strategies. Believe me, wine is NOT a coping strategy lol!

Jokes aside this is serious. Self care should NEVER be forgotten at any time and especially not right now. Its very easy to forget ourselves at times as life gets in the way and we are understandably worried about family, elderly relatives and friends but don’t forget about you.

As a community we have to pull together and help each other. I find scheduling calls or just spontaneous calling (you know like we used to do before mobiles existed) are a great way to check in. Even a text goes a very long way.

The MRKH community are doing much the same with online and informal ‘chin wags’ now twice a week which is an excellent idea and a great way to get people together. In a time when we may already feel isolated because of our condition and then feeling more isolated as we can’t go out and interact, its easy to live in your own head. Its scary.

Right now this is a stress test and it can feel rather negative and stressful and we may feel like the Lego head on the left, understandably. But we can turn this into a positive and be more like our smiley friend on the right. Not all stress has to be negative.

We can make the stress work for us. The positive stress test is a term I have come across whilst running but it applies to many other situations. When our bodies are under stress it can be negative but we can also harness it in such a way to benefit from it.

Where we are now, the premise can be the same, we are in a stressful situation that we CAN take positives from, and I don’t just mean we can stay in our PJs all day, but we can use it as an opportunity to really connect with ourselves and with others. There is so much love, kindness and support out there.

No one needs to feel alone, unsupported or unwanted. Its ok to have a cry, to scream to shout. Acknowledge that when it happens. Don’t block it out and then plan some activities during your day to take stock and recharge. Maybe that’s going for a walk, run, call a friend – its not like any of us are busy right now!

Stay home, save lives but remember you are not alone.

Love to all right now

Charlie xx

The head key

What would it be like to go into our own heads and rummage around in our memories, removing those bits we don’t like or wish had never happened? Removing those feelings we don’t want to handle like fear and anxiety. Replacing things with something nicer that makes us smile more.

We all have things that bother us and life would be so much simpler if we could remove those thoughts, memories or parts of our mind that made us feel bad.

But the key to our minds is not of course a key like we know it. We are the key.

Only we can find a way through the challenges that we face or the struggles we have or indeed how we hold on to and cherish those wonderful memories that we have and those positive emotions and feelings.

Our mental health is complex and everyone is different. There is no ‘one solution’, no catch all. No fixed timeline.

I’ve talked about this many times and whilst not wishing to repeat myself this is not just something you can write about once and forget it. It just doesn’t work like that.

Sometimes we can’t explain why we feel the way we do. Why we reacted the way we did and for so many of us its unlikely that we will often show our real true feelings to anyone else than ourselves.

It has struck me recently how many people have come out to highlight their own challenges with mental health and how it made them feel. Yet it is still something we are perhaps ashamed of or at the very least made to feel ashamed of. This is wrong.

No one should be ashamed of just being human.

It doesn’t matter how big or small the issue is, how many times you go to therapy (or not) or how many times you find yourself crying on your best mates shoulder or trying to work out why you couldn’t cry except to yourself. It all affects us in so many different ways.

For me I went through stages of grief and anger and not really knowing what it meant or what I was meant to feel, which scared me all the more. Processing something that has come from left field, totally unexpectedly is not a simple process.

Dealing with that at the same time as trying to figure out being a teenager, then two of your friends die in separate car crashes and it all seems like the world is against you. I knew it was bad when because of all the stuff in my head I was trying to process I used to hide alcohol in my wardrobe just to give me something to feel or forget. Until my mum found it and called it out for not being the way to handle things, which of course it wasn’t.

This is not a woe is me post at all but more to highlight that we have no idea whats really going on with people and how they are (or not) dealing with it.

Throughout the last 15 years or so I have gone through several cycles of psychologist therapy. I’ve felt embarrassed to tell people I am going in many of those cases. Why? Well, because we are made to feel as a society that this is not something we do.

I believe this has changed a lot in the last 20 years but we still have many steps to go, including making sure there is more support available for people who need it when they need it. There are many ways that we could all be more considerate to each other in understanding that something that is invisible is no less important or has any less powerful impact on us personally. The worst outcome of which can be completely tragic and avoidable.

But to know how to find your way sometimes we can’t always do it alone. We almost always need some help. I am not saying everyone should go and see a therapist as that isn’t for everyone but finding something that works for you, to help you get your head straight, and brings you some peace, is important.

I don’t see a therapist at the moment and maybe I won’t need to again. I have fully accepted MRKH and what that means. I feel strong and my total attitude has changed in a positive way. I can’t even really explain how, in a way its like some realisation dawned, some light switch turned on, or maybe I have just become more accepting over time. What I do know is that sometimes going through a whole heap of shit whatever that may be makes you at some point step back and look at yourself. Do you like what you see?

If you don’t then thats the first step to making a change and being that strong person that you really are even if your fear would have you think otherwise.

But if I needed to go again I would. Those sessions have really helped me get through some pretty dark times and find some things that work for me in managing what can feel like my hectic and often overly complex mind.

I learnt that you have to grieve for the loss of something you would never have (at least in the way you expected) before you could come to terms with what that meant for you and how you, and only you, can find that way to accept the condition and find a path forward.

I speak to so many girls (and their parents) who have just been diagnosed with MRKH and are struggling to find their way and what this means. They are shell shocked. That time feels the loneliest and the scariest for so many and understandably so. Whilst for others reality doesn’t hit them until later.

I just remember after being told I just couldn’t wait to get out of that hospital and go home. I didn’t process it for a while really I don’t think. Looking back its all a bit of a blur to be honest.

Nowadays there is a lot of support out there, so many blogs and support groups and information but in some cases its not always easy to find and varies so much in different regions across the world. But speaking to others who also have or are going through the same thing you are, where you can share your story or even just listen, goes a long way to lighten the load.

Mental health is real. It doesn’t mean you are crazy. You shouldn’t feel ashamed that you need help or that you can’t manage.

You are your own head key but sometimes you just need a little help so the key doesn’t get stuck.

Charlie xx

Do we ever really talk anymore?

I am reminded on a regular basis how important it is to talk. I don’t mean the type of day to day talking, I mean really talk. You know the mushy sensitive stuff. Feelings, problems, hopes and dreams.

I know that may seem like a nauseating way to start a blog but it is true.

It wasn’t that long ago that we actually had to pick up a phone, write a letter or physically pop over to have a conversation with someone. Shock horror to the Gen Z-ers but we didn’t have mobile phones or the internet. Yet now we don’t have to do that, many of us (myself included at times) have forgotten the value of conversation.

Just that general tone of your voice, or the look on your face may be enough of a trigger for someone to know something wasn’t right, there was something you wanted to say, some exciting news to share.

Wouldn’t it be nice to be able to do that more than perhaps some of us do (its a thumbs up from me!)?

In a world where technology essentially rules our lives in too many ways to comprehend there are positive and negatives. Negatives in so much as we run the risk of disconnecting from ourselves and our lives and hiding away.

But there are so many positives too. We are now able to speak to people regularly and easily through the internet – still ‘on the phone’ but a different method. Yet we often don’t take the time to do that.

I appreciate I am generalising but our ways and means of communication have changed and it isn’t as easy as it should be to really say what we want to, in the right way, to the right people, to get the support that sometimes we badly need.

There are those of us that immerse themselves in social media in the lives of others in an attempt to find ourselves but ultimately that doesn’t help us or console us from the problem we are facing. In fact it can sometimes make that whole process far worse. Those calls to your mate have been replaced with text messages where emotions are displayed through emojis.

Perhaps I am showing my age but the importance of communication should not be understated. How to communicate I appreciate varies, but it is so much easier now to shy away from true communication. We live in a world where we are now so connected we physically don’t have to speak to people anymore if we don’t want to, even at work in some cases (thank you emails and instant messenger).

In reality face to face communication I still believe is the best. It works not just for your professional life but also for friendship and family.

People want to build relationships with people.

It is still most optimal to do this in person but there are situations where that isn’t possible and we have to find other ways to connect in an equivalent ‘face to face’ manner.

I am always comforted to see that there are so many support groups for so many different things that bring people together and encourage them to share their thoughts and feelings on that subject or issue. But it should be the one step, not the only step particularly when we really need support.

We all know that when things are written down they can be misinterpreted and that poor use of an emoji in the wrong place or a grammatically challenged paragraph can have a different meaning to someone than was originally anticipated. This more faceless style of communication has its place but it doesn’t always help us build relationships and help us to get the support we need.

This is something I have been working hard on over the last few months (and I don’t specifically mean my grammatically challenged writing which I realise also needs work).

I have the immense privilege to take over as Director of MRKH Connect a registered charity set up in 2014 with the primary aim to provide a safe and secure space for MRKH women to connect and chat from all over the world including through its interactive map, chat and forum. Always having the focus of bringing people together. No one should feel alone.

Bringing people together is not just ‘virtually’ but it was designed to help connect you with those locally to you, wherever you are, as a conduit for meeting people in person.

Of course that doesn’t underplay that seeking support and then having the strength to attend a support group meeting or grab a coffee with a new online friend is easy. The main thing is that help and support can be found, on your terms.

Whilst not intending (at all) to underplay this important role here, or indeed my excitement to take this on, we are in the midst of a relaunch of the charity and there is lots more exciting news to come on this over the coming weeks so I will save more details on this specifically until then.

I did however see it as a useful example to support this blog. How we talk and interact with people is obviously changing and has changed even over the liftime of the charity. There are now different considerations when it comes to how we build connections in an effective way so they are meaningful and so that those who need support, at those critical times, get it.

This doesn’t just affect one generation, therefore building something that ticks a lot of boxes is challenging for that reason. But ultimately ‘talking’ is where we need to get back to.

I live 9,500 miles from one of my closest friends and its not always easy with the time difference to speak on the phone so we leave each other conversational voice recordings. That way its like having a (super delayed) conversation with each other. We can hear each others voices, understand (and hear) how they are and what they have been up to.

We can share our thoughts and feelings just as we would on the phone but without the immediate response we would normally get, although of course we both know thats there as needed particularly where its important.

Thats not necessarily ideal either but we both found it a much better way to feel more connected to each other and still feel able to actually share things than just texting.

Talking doesn’t have to mean actual mouth-open-speaking to someone (albeit its still my personal preference) sitting opposite you or on the phone. Talking now is different but it is no less important.

In our increasingly technological world we need to find ways to still be able to talk and share our feelings, problems, hopes and dreams. If that can’t be in person then with all this technology available there is always another way.

Never stop taking those moments to talk in whatever form that takes for you. Even if you don’t have something to say maybe they do.

In the immortal words of Bob Hoskins “It’s good to talk”

Charlie xx

http://www.mrkhconnect.org

@mrkhconnect

Born Without: Am I a Woman?

Simple answer.

Hell. Yes.

However, our identity is something that can absolutely be challenged by being told, often as a teenager that we won’t ever have periods (well that seems good right?…yay!), will often have to undergo some treatment to have a comfortable sex life (getting less ‘yay’ by the second) oh and your lack of (or underdeveloped) uterus means you won’t ever be able to carry a child (‘yay’ is now in a far distant land ).

As a woman you learn about the female body and how it works and what should happen and when. You aren’t taught that sometimes those things don’t happen or why they don’t happen. So when you are presented with an effective void where there should be something that for all intents and purposes identifies to you a part of ‘being a woman’ then processing that and accepting that can be a challenge.

Periods are seen like a symbol of female identity and womanhood. So the absence of this makes you feel different, particularly as a teenager going through hormones, puberty, peer pressure and well just everything. For me, I definitely felt different. When everyone else was talking about periods I was finding myself making things up just to feel like I fit in or excusing myself from the conversation. I didn’t feel like a freak, I didn’t feel un-normal, I just felt weird.

The mere thought of ‘owning up’ to the fact I didn’t have periods, well I couldn’t even fathom what the girls in my all girls comprehensive would say. So I just didn’t say anything because I was pretty scared about the response. As a teenage girl this was not how it was supposed to be!

That being said I wasn’t afraid of telling people about MRKH, I was oddly quite proud of being able to say (and spell) the full acronym, I was just selective of how I did it and who I told and what I shared. I think I even gave one of my friends a very medical/clinical leaflet(!) or I often snuck it into a conversation like it was totally normal. Like on the way to Geography or something.

But I didn’t tell everyone everything and I definitely didn’t want some girls in my class to know for fear of ridicule or perhaps being thrown in a dustbin again (that had happened before). In reality my problems were not ever going to be at the forefront of peoples minds but if some people knew would they just laugh or worse, feel sorry for me?

What was actually easier to do was talk to a boy friend. They don’t have the sympathy or empathy in the same way and I found that bit the hardest when talking to my female friends. They also don’t ask so many questions!

Boys don’t really understand girls or girls bodies which helps 🙂 (at least not as teenagers and some I would argue never get to that point). Telling a boy was one thing but telling a boyfriend, something else.

My boyfriend was 2 years older than me and it was very daunting (and I am underplaying it here, its terrifying) to tell him at a time when we at least felt like we were under a lot of peer pressure – ‘hey its great and you’re awesome but I can’t have sex until I have done this treatment which will probably sometime next year’ – it could have gone a lot worse than it did.

Sexual identity much like periods is a part of life that I wanted to explore but I felt very embarrassed, stupidly so, that I wasn’t at that stage. In reality of course I think it gave us the chance to respect each other much more and find other ways to have fun. It really isn’t all about sex.

Even after the treatment I was then permanently worried if it felt different, or weird or bad because I wasn’t the same as other women. But of course what does being ‘the same’ mean. I can look back now and think how silly I was but at the time it feels all encompassing.

For both Mia and I the fact we had met each other at a time where we were both going through this treatment was a true blessing. I know we were both curious about the other and also probably as nervous as each other to finally meet.

Suddenly this thing which affects 1 in 5000 women, which was a hard to fathom number, felt a lot smaller when there is a girl in the next room who totally understands and is going through the same thing. Someone else who totally got where I was coming from. Sure there were differences to our experiences but many similarities too and that was also interesting to learn and to go through together.

What is perhaps obvious, but I found interesting and a little comforting, from Mia’s great writing, is that the feelings we have are often no different to those of us with different sexual development, fertility issues etc. Perhaps those feelings come at a different stage of life but they are no less important.

The general feeling of being different is compounded by the ‘feminine ideal’ and whats the ‘norm’ without considering that there is a huge heap of women (and of course men) who go through or have fertility issues. That’s not a small number, it’s at least 1 in 8 couples globally.

I really like this paragraph from Mia’s text so I am copying it verbatim. Its no wonder that our ideals around women and our own identity can be challenged in a society that has to dominantly been focused on the female identity as periods and motherhood.

Feminine research equates motherhood with femininity (6; 2; 4; 3), thus it is unsurprising that the participants feel on the outskirts of societal norms. 5 describes motherhood as women’s “raison d’être”, so it is unsurprising that the participants should feel at a loss in fulfilling the societal expectation of gender ideals. Feminists have identified menstruation as ‘the uniting entity between women’, as something that all women share (1). This positive view of menstruation and ‘womanhood’ neglects that women with primary amenorrhea have never experienced a single period and never will.

Despite there being papers used here that are 30-50 years old some of these ‘ideals’ are very much still part of our society today even though they are antiquated and quite frankly incorrect.

Ultimately, we need to continue to educate people.

I know a considerable amount of work is being done across the wider community to raise awareness of MRKH as well as of other fertility conditions that don’t fit into that ‘societal norm’. By raising awareness there is an opportunity for wider acceptance of the different issues and challenges that can affect women (and men) so that it no longer becomes an assumption that everyone will have those same experiences and we will no longer treat such topics as taboo.

We still sadly have a long way to go.

Charlie xx

This blog is part of my Born Without series building on the work of Mia whose name has been changed on her request as she wishes to remain completely anonymous. She has provided me with permission to kindly share all of her research specifically for my blog. Love you M x.

References (for completeness):

  1. Kitzinger, C., & Willmott, J. (2002). ‘The thief of womanhood’: women’s experience of polycystic ovarian syndrome, Social Science & Medicine, 54, (3), 349-361, doi: 10.1016/S0277-9536(01)00034
  2. Glenn, E., Chang, C., & Forcey, L. (1994). Social constructions of mothering: A thematic overview. In Glenn, E., Chang, C., & Forcey, L. (Eds.), Mothering ideology, experience and agency (pp. 1–29). London: Routledge.
  3. Oakley, A. (1972). Sex, gender and society. London: Maurice Temple Smith Ltd.
  4. Rich, A. (1976). Of Woman Born: Motherhood as Experience and Institution. New York: Norton. doi: 10.2307/3346405
  5. Russo, N. F. (1976). The Motherhood Mandate. Journal of Social Issues, 32, 143-153. doi: 10.1111/j.1540-4560.1976.tb02603
  6. Weaver, J., & Ussher, J. (1997). How motherhood changes life a discourse analytic study with mothers of young children, Journal of Reproductive and Infant Psychology, 15,(1), 51-68. doi : 10.1080/02646839708404533

Born Without: Coping

The second in the Born Without series of posts deals with coping. Having your understanding of the world changed so dramatically cannot be an easy reality to face. The strategies we use can vary in type and application to best meet our needs.

This post shares some insights into how coping mechanisms can differ between two MRKH women and how they have developed strategies to deal with the diagnosis including hiding details from others for their own self preservation.

These two women were diagnosed about the same time but had very different roads towards that and were 7 years difference in age.

I found out relatively quickly from that first GP appointment to diagnosis was about 8 months (excluding the year I was told to wait just in case things happened naturally) whilst Mia didnt get a final diagnosis until she was at University where she found out kind of a little by accident, in that a doctor blurted out something along the lines of “and of course you can’t have any children” which no one prior to that had told her.

Two very different experiences do naturally have an affect on coping strategies one a teenage girl in her last year of school and the other at University both with the challenges those situations can bring.

Its no surprise perhaps that one reaction was to ‘forget’ it all together and block it out. Whilst common to both was finding a mechanism to speak to others about it in such a way that even played down the seriousness. A casual ‘oh by the way I can’t have children’ whilst on the way to Geography kind of thing.

Lots of people who know me know I am a pretty outgoing and smiley person and I am utterly terrible at giving bad news, a trait I probably get from my mum who has this wonderful knack to tell a serious story in such a way that well does not relate to the jovial excitement of her story telling – anyone who have heard her relate the ‘and he took her into the woods’ story will know what I mean.

But in all seriousness we were two women, well girls really, who needed to find some way or comfort in telling someone about the situation and we both had very different ways to do that and quite different reactions to it from those receiving our news.

Mia has always been very selective about who she tells and this still largely remains her close family circle. Some friends know something but they don’t know the whole story and its never talked about. I would say in my experience from the people I know there are many many more who keep this very much to a small group of people.

For me, I found it more comforting to tell people. To talk about it. At least until a point I felt like I was boring people and going over the same things over and over again then I got a little concerned my friend would start unfriending people. I told a lot of people. I even at one point was telling random people it felt cathartic even to tell someone something. Whilst now I really feel its part of me and I want to tell people about it in a far more constructive way.

My worst experience of telling anyone was my boyfriend at the time. I told him the day after I found out and he was very comforting but as it turns out also very emotional himself and didnt know how to take the news. He too sought solace to get his head around it.

For that I don’t blame him but when I turned up to a pub a couple of days later with all of his friends, the majority of whom I didn’t know, and it seemed they all new this really very personal thing about me that I wasn’t ready to share quite so publicly I was extremely hurt. Needless to say that relationship didnt last much longer

In contrast Mia shared what she felt comfortable with with her family and her boyfriend (now her husband) but she has blanked a lot of her memory from that period of exactly what she said or exactly how they reacted.

Not least because on one of her appointments leading up to diagnosis her condition sparked a lot of interest from the doctors in her local hospital and one doctor asked if some of the students could come and have a look. feeling a little bit like a prized exhibit at a country show she reflects that whilst she felt she was doing something positive to raise awareness of a condition (which as she learned was rare) the other half of her brain is saying “You’re a freak, you’re really different, this is really weird, no one’s seen this before. Look at the looks on their faces, they’re all really fascinated at how weird and strange you are.” This experience had a big impact on her as you might expect.

Coping strategies I think for both of us then changed when we met. We had the chance to meet whilst going through dilator therapy. Its hard enough trying to cope with this rather obscure seeming treatment but when you are a patient that physically can’t have children and are on a maternity floor it all seems rather insensitive. No one knows why you are there and you are wearing your own clothes not a hospital gown. Just a strange situation.

Something we both kind of look back and laugh about now but at the time I think we both tried to block out where we were and were more relieved, through what was a really lonely few days for us both, to have some company and someone who truly understood how we felt and could relate completely to what we were going through. A friendship that has remained for nearly 20 years.

Coping and reaction to different situations I know has been hard for both of us at different times albeit probably for very similar reasons. I found a lot of comfort in seeing a psychologist and attending support group meetings but Mia typically didn’t come to those meetings preferring instead to keep it much more private and to deal with it on her own terms.

Attending support group meetings I know is not for everyone and can of course be a daunting prospect. Yet, at least for me, I have found them to be fantastic and a great way to meet others, share experiences and learn about different things through lectures and invited speakers. The perhaps more laughable thing is that these meetings are funded by the nurses/doctors themselves, they do not (at least did not and to my knowledge this is still the case) receive any NHS support to run these so vital meetings. Women and their families, friends and partners travel from all over the country to attend what is normally a 3 hour meeting in London, just to be part of this community, to meet others, and try to find some support.

Coping and the way we deal with things varies. Mia and I are just two people who whilst similar in background and religion have had very different ways to deal with MRKH but both feel we are in a good place. I am certain that widening this study further will only highlight more differences and I suspect of course many similarities too.

There is no one fail safe approach here and sometimes we may have to find several different methods before we find the one that works for us and maybe what worked before just doesn’t now. That’s ok.

I am all too eager and impatient for things to just change and be ‘right’ and for everything to be all nice and fluffy but of course in reality things don’t happen at a click of a finger or a blink of an eye.

The main thing is to be aware that it takes time. Time is a theme that runs through all of this and over time we change as people and therefore our needs change too.

What is clear is that whilst trying to forget or blocking out a bad situation or memory can be effective (or seem so) for a short time it does not have longevity and ultimately isn’t helping anyone.

We must find the coping method that works for us and at the very least I would recommend anyone going through something major to seek support from others going through the same thing. Its a great first step to navigating your own path to coping.

Charlie xx

This blog is part of my Born Without series building on the work of Mia whose name has been changed on her request as she wishes to remain completely anonymous. She has provided me with permission to kindly share all of her research specifically for my blog. Love you M x.

Born Without

September 16th to 22nd is World Childless week, a week that aims to raise awareness of the childless not by choice (cnbc) community. There are so many reasons, some of which are not medical, as to why someone, male or female, may be childless.

One of those reasons is MRKH.

Its difficult to really explain what being in that position feels like for most people and how it can affect you psychologically in particular. I have touched on a lot of specific points in my blogs before but I wanted to strip it back to some basics in the hope of shining a more specific light on this as part of a series of blogs over the coming weeks/months that I will be writing which have been based on my own experiences, reactions, challenges and more recent direct participation to support new research by my friend Mia*, designed to start to shine a light not on those newly diagnosed but on those whose diagnosis was 15+ years ago and how it has challenged their own identity at a different stage in their lives.

Part of this research included an interview which I have (very much) adapted here as a starting point.

What is MRKH?

Is a rare congenital syndrome named after the first publications by Mayer (1829), Rokitansky (1838) and Kuster (1910), Hauser (1961) often shortened to MRKH but sometimes also known as Rokitansky syndrome or Mullerian Agenesis. In practical terms it is the significant malformation or complete absence of the womb and under development of the vaginal tract. What causes this underdevelopment during the embryo’s development is still unknown. It affects approximately 1 in 4500 women globally.

When did you find out you had MRKH?

I was 17

How did it make you feel when you first found out?

I was with my mum. It took ages for the Doctor to come back after the laparoscopy and tell us what it was by which point I was tired and in pain and just wanted to go home. Mum cried but I admit it kind of washed over me a bit at first. I couldn’t really comprehend it if I am totally honest.

How does it feel to have a condition that affects 1 in 4500?

I don’t even know how to explain it. It really doesn’t feel that it’s just a small number. Granted at first when I hadn’t met anyone else it seemed impossible I would ever do so and therefore felt quite lonely but in reality that was for a short time. Having met so many more people a few of whom are now really close friends it doesn’t feel-, quite as daunting and actually like quite a big number in reality. The key reason for that indifference to me is the support I have both received and sought out myself directly. It has had a huge impact on my perception here.

What challenges have you faced?

My main challenges have really been with myself and comprehending, managing and coming to terms with it. A concern with what other people think, have thought or may think rather than reality. So there have been a lot of ups and downs over the years, most specifically emotional and psychological which are basically impossible to prepare for. It was my boyfriend at the time who mentioned to me that perhaps I should go and talk to someone. I remember being really nervous saying to my parents that I thought I needed to talk to someone. I’ve now gone through four different cycles of counselling at different times over the last 17 years to focus on the different stages or triggers in my life. There is still such a stigma around asking for help which continues to sadden me. The only other key personal challenge has been related to access to fertility treatment. You can read my blog on IVF Surrogacy here.

Would you say that MRKH has an impact on your life right now?

I think it’s something I will always think about or at least have in my mind. Saying that I actually feel it’s had a quite a positive impact, sounds a bit silly when I say it, in the sense that I think it’s made me, so much more aware of- different situations, different emotions, different ways of dealing with things. You don’t expect this to happen to you, and then when it does you have to process how you deal with it which is a little alien as its something you are totally unprepared for. So I think it’s given me a newer perspective as to, how difficult that part is whilst also providing me with new tools and skills I would otherwise have likely never known. Its not just something you snap your fingers and get over. Yet aside from the negative outcomes I feel more positive about it now than I have ever done.

So how has your viewpoint on MRKH changed over time since your diagnosis?

Quite a lot to be honest. When I was first diagnosed I was really embarrassed about it. A 17 year old girl who finds out there is something wrong with her own reproduction system it is going to have an impact. You don’t feel like other girls who are experiencing the full throws puberty with the addition of periods (a clear positive I don’t have to deal with I must add). At that age I wasn’t at all sure how to deal with the rest of it. A little later came the anger, sadness the drinking too much, the burying it. In many ways common (but totally ineffective overall) coping mechanisms I must add. Then of course the stages in mid to late 20s when my friends started having their own kids to then over time considering those options myself with the raft of emotions that also brought. To now where I am largely at peace with it to be honest and very much content with life as it is. Who knows perhaps even without MRKH I would be childless just by circumstance. We will never know.

What would you say to someone who has found out they can’t have children?

Nothing can prepare you for how you will feel. My best advice would be to find support in whatever way best works for you. Talk to people. Find comfort and find a way to process this. Don’t think it can be solved overnight. Cry. Scream. But most of all don’t think its the end of the world. It may feel like it and I get it, I have been there but give it time. If you can come to terms with it you will find happiness in your life however that comes.

*Mia’s name has been changed on her request to remain completely anonymous but she has provided me permission to kindly share parts of her research specifically for my blog. Love you M x.