MRKH and LOCKDOWN
‘It takes a lot of courage to show your dreams to someone else’
#MRKHandLockdown is a platform for everyone living with MRKH to share their thoughts, experiences and feelings they have and continue to have during this period of lockdown. Do you have a piece to share with the community (it can be anonymous too!) then please get in touch we would love to hear from you.
Irene
Irene
We heard this after speaking with Irene for some time and we were delighted she was happy for us to share this in support of MRKH and Lockdown and as a way to remind us all that despite the challenges that MRKH can bring, we are capable and strong and awesome.
Thank you Irene for the touching reminder! Read what she has to say about her piece below
“I wrote Victorious back in February 2018, I was 15 years old at the time. I initially wrote it for a friend of mine who was going through a rough time, but my message behind it is very universal, and I feel like 2020 has made it extra important to hear and feel a message like this: The difficulties you face in life do not define your worth, or who you are at heart.
It’s about finding strength in vulnerability, and a reminder to be kind to yourself throughout that process. We aren’t strong in spite of our weaknesses, but because of them. We’re capable, we’re strong, we’re lovely; We are Victorious!
I believe this is a message that can resonate with many. I hope it makes you feel inspired, hope it can make you feel as loved as you are.
You can find me on Instagram: @irenepluym_music”
Stacey
Stacey
Claire
Claire
The Delay of the Pandemic – In the Life of an MRKHer
There’s no doubt that the pandemic has changed the world we live in. In one way or another, it has affected everyone on some level, resulting in a lot of uncertainty, stress, and concern, and with no real end in sight. We never know what the future will bring – let alone the next day, which makes it nearly impossible for many of us who had hopes and dreams to plan for a life ahead.
As someone who is already 32 years old, lives with her long-term boyfriend, has aspirations to be married and start a family one day – but also has MRKH, the anxiety is real. It just adds to the never-ending waiting game we seem to be constantly dealt with and feels like a constant weight we carry around, mostly in silence.
A couple of weeks ago, I was on a zoom chat with other MRKHers, and one girl talked about how her wedding had been pushed back to next year due to the pandemic – and how this made her feel even more anxious because it was just another thing – another big delay – in her way of wanting to start a family.
In regular times, girls with MRKH already have to deal with the constant burden and unknown of what their future will look like, especially when it comes to having kids. Now, things feel that much more unreachable and further away because of the delays the pandemic has caused for those of us at this stage in our journey (I briefly mentioned the constant “waiting game” when I turned 30 on this post).
My boyfriend and I originally planned to be engaged sometime this year, but now with the pandemic, we can’t help thinking, what’s the point? Or in other words, what’s the rush? We have so many questions like: what kind of wedding can we even plan at this point? What if we plan for a larger group in time, but then we’d have to reduce it due to rising COVID cases? The pandemic has undoubtedly caused a shift in our plans – which also means, the dream of wanting to start a family is even more pushed back.
You can imagine the strain this causes someone like me. I have thoughts like, what if I’m too old by the time I have my first kid? What if I feel more left behind “in life?” What if I’m missing out even more now? How do I shake off the feeling of constantly comparing others’ lives to my own, when mine is so completely incomparable? It feels as if my thoughts are continuously being consumed by these beliefs, and I can feel the tow this has been taking on my emotional well-being.
My boyfriend and I know we have options. We know if things are like this for the next couple of years (knock on wood!), we can choose to start a family sooner rather than later. One of the things that holds me back though is the possibility of contracting the virus, particularly if it means having to go to the fertility clinic on a regular basis to start the process of IVF. We would definitely want to make sure we are taking all the precautions if it comes down to that.
The pandemic has not only caused these concerns in our life, but many others as well. I think about other MRKHers who are at different stages in their journey and feeling the strain in other ways. Maybe they were trying online dating and now feel they can’t do so. Maybe they are feeling the ticking of time going by as well. Maybe others were waiting on adoption, only to be delayed more now because of certain restrictions. Maybe someone was waiting for their surrogacy journey to start – and now have to wait even more now. The possibilities are endless.
Even in-person MRKH meetings and conferences are put on hold. I used to enjoy going to my meetings at Toronto Sick Kids Hospital to connect with other girls – who else understands you more than them? – and now, we can’t even do that, making us feel even more isolated. Thank goodness for the Internet in these times, keeping us still somewhat connected through online groups and virtual meet-ups.
When you think about it, the whole world has had to put their life on hold or been restricted in some way due to the pandemic. Simple things, like not being able to graduate with their class or even hugging their grandparent.
Etc., etc…
It’s a challenging time for many, and we can only continue to do our best and take things one step at a time. For other MRKHers who are going through a difficult time due to the pandemic: I hear you. I see you. You are not alone.
Claire
@girlwithmrkh
https://girlwithmrkh.wordpress.com/
Stephanie
Stephanie
Two weeks before my state entered lockdown, when we were just hearing whispers about Coronavirus, I had my first appointment with a therapist. After eight years, I had decided that I needed to formally deal with MRKH. Having reached a stage of my life where more women around me are getting pregnant, coping had become increasingly difficult and my anxiety about the future was making me miserable. Thankfully, when lockdown started, my therapist and I quickly made the transition to telehealth sessions so I could keep working with her. I enjoyed those sessions just as much as our in-person visits. Having therapy in pajamas with my cat on my lap? Yes please!
Though I’m considered an essential worker and still had to physically report to work during lockdown, everything that I did outside of my shifts abruptly stopped. I was disappointed when an MRKH conference and a visit I had planned with a close friend with MRKH were cancelled, but attending a virtual conference this summer helped me feel the connection to the MRKH community that I so crave. I did my best to stay busy, and though I had my fair share of sad and lonely days, the extra free time helped me to work through all the thoughts and emotions that came up in therapy without having to rush myself.
A few weeks ago, I decided that I needed another way to cope with my emotions regarding MRKH. For several years, I’ve used writing as an outlet, and I recently discovered the powers of exercise for working through strong feelings, but it just wasn’t enough. Delving into sensitive topics and bringing up old memories intensified everything that I felt about MRKH. Inspired by an offhand comment from my therapist, I purchased a painting set and went to work. Being able to express my pain and heartbreak in more abstract ways has been the release I needed. There are some things that words just can’t express.
Charlie
Charlie
Lockdown has brought with it uncertainty, doubt and sadness yet through all of these understandable negative consequences there has been an abundance of strength, courage and motivation. Time to do more, to consider more or to challenge ourselves. Charlie shares with us an insight into her experiences in lockdown and the importance she has found in support. Support for herself, for family & friends and, more importantly, for each other and finding new ways to access that support when meeting in person is not possible.
“No one should feel alone yet lockdown instantly makes us think of loneliness. I chose lockdown to really find a new and positive way to work to change that and share some of that love and support to those who have found this time so much harder for so many reasons”
Laila
Laila
“Lock down has been a mixed bag! I’ve had times of quite frankly deep depression and sadness however, though the darkness comes light! The many zoom calls with all the beautiful butterflies as well as being given the opportunity to be creative though poetry, writing and drawing these things have helped so much. I’ve actually had time to think for the first time ever and express myself as well as coming to terms with this diagnosis. This has been such a good opportunity for self discovery and disclosure. I am going back to work soon and I’m going to miss all the free time. Lock down has been a mixed bag! But you know what I’ve learnt so much it’s been worth it.”
This is a lovely graphic piece from Laila. Laila was diagnosed just over a year or so ago yet over lockdown has found her voice and even started her own podcast – Me, Myself and MRKH – to share her experiences of MRKH and raise awareness of the condition and of fertility in general. Her podcast is available across podcast apps Spotify, Pocket Casts, Anchor and Radio Public.
We particularly like this quote from her piece
‘I’ve actually had time to think for the first time ever and express myself as well as coming to terms with this diagnosis. This has been such a good opportunity for self discovery and disclosure’
Showing that despite the many challenges and sadness and even depression she felt at the start lockdown has presented an opportunity. An opportunity to connect with the community and build her confidence to talk and share and disclose her own experiences and know she is not alone.
Thank you Laila!
Geepies
Geepies
I consider myself to be incredibly lucky to have had a ‘good’ lockdown compared to many. I and my loved ones are safe and well, I still have my job and I’ve been able to remain active which is really important for my mental and physical wellbeing.
Lockdown has had quite a profound impact on my relationship with MRKH in ways I didn’t anticipate. Although I was diagnosed many years ago it’s only been in the last three years or so that I’ve found, joined and been embraced by the wonderful MRKH community that exists in the UK and across the world. I’ve met some of the kindest, accepting and simply beautiful souls through finally admitting to myself that while I’ve found my own way all these years, I also had a lot of unfinished business.
Engaging with other MRKHers has helped me to explore my past safely and with love. Giving compassion unconditionally to others helped me be more accepting of myself and to some extent face the excruciating shame I have been plagued by since the moment I was diagnosed. However, this new-found world of MRKH sisters has been largely secret. You see, I don’t talk about MRKH with my family, apart from my husband, and certainly not with friends, except for a select few. I put it down to the traumatic impact of my diagnosis at a time when there was no emotional support offered to a terrified, introverted 16 year old or her mother who was wracked with guilt and consumed with worry that no one would ever love her daughter because she was born different.
So I hold my MRKH and family lives in tension, careful that the two worlds should never accidently collide. The pandemic has made my world incredibly small. I no longer have a lengthy time-consuming commute; although tiring, it was also a time I often used to catch up on messages and respond to Facebook posts in private MRKH groups. My emotional focus has been on my family, especially my parents, because of their increased vulnerability to coronavirus as a result of their age. I find I have less time and emotional energy to invest in all the areas of my life in the way that I’d like. For me that means that MRKH has taken much more of a back seat for the time being.
My main reason for writing this blog is to try to say to my MRKH sisters, both existing and those I haven’t yet met, that I think of you often. You have helped me so much and in lockdown I’ve been able to use my learning in new ways to support others: the compassion you’ve enabled me to develop means I’ve been able to help my mum through some difficult periods of lockdown. And I’m mentoring a new colleague who started their job during lockdown and who hasn’t had an easy time.
I want you guys to know that I’m trying to pay forward the kindness and support I’ve been fortunate enough to receive. Writing this piece has enabled me to see that I’m still on my MRKH journey and still learning – and that feels good. Thank you x
Vics
Vics
Anyone needing some inspiration? This is a wonderful piece courtesy of the lovely Vics (with a bit of help from TikTok) – she was diagnosed only a year ago and has started to find her voice during lockdown and we are so pleased she has. What an inspirational young woman who has found support and embraced it with both hands helping her build confidence and strength.
We all have good days and we all have bad days but being there for each other is what we are here for. Whether you want to publicly advocate, privately share or just want to know you are not alone this is a strong message and one we are proud to share.
Claire Weobley
Claire Weobley
“When you face difficult times, know that challenges are not sent to destroy you. They’re sent to promote, increase and strengthen you” – Joel Osteen
During Lock down I’ve grown in a huge abundance of strength, courage, and determination!!
At the beginning of lockdown I was suffering terribly with my anxiety…… I was very withdrawn, scared of the uncertainty of what Lockdown was going impose on us all as it very quickly consumed the world, our country our life and our independence!!!! 
I was extremely overwhelmed at the prospect of what life in lockdown would have on my overall wellbeing and mental health!
I decided to take one day at a time. I began to open up to close friends and family. I decided I had to change my mind set!! Focus on the positive of this current situation we were in!……..
I decided to start meditation on a daily basis and some yoga on a regular basis. Soon my positive attitude soon developed and begun to flourish!! These two combined help me stay positive, focused, and balanced!
It’s amazing what self care and being kind to yourself have on your well being! My Attitude is strengthening and my overall mindset has shifted for the better!!!
As my well being and mental health improved I have became stronger enough to interact on social media, connect with my friends/ family and my MRKH sisterhood once more!!
I felt like a massive weight had lifted off and I didn’t have this burden of gloom and feeling reluctant about my future and the future of the current situation! I looked for the positive outlook in my life! The silver lining ……. turning the negative situation into a blessing!!
During lockdown my blessings have been to spend quality time with Hubby, chat to family, and close friends, including some very special MRKH sisters. Being able to dedicate essential time to meditation that I would not had included into my daily routine if it wasn’t for lockdown!
“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” – Elizabeth Edwards
Due to the pandemic events, gatherings etc obviously had to be cancelled. My own blessing due to clever technology I was able to attend a Global MRKH event back in June and was very grateful for this opportunity!
It was so lovely to see and meet new faces as well as some familiar faces too! I was in complete Awe of everyone that was involved to make that event possible and felt totally Empowered by the evening!
Connecting again with such a fabulous Sisterhood strengthened my soul, my well being and state of mind to another level! For that I’m eternally grateful.
Sisterhood: a bond that can get you through anything
Being a MRKH warrior makes me appreciate my blessings . I’m constantly reminded that I’m here today because what I’ve been through, but I wouldn’t have it any other way! I’ve met, and know, some fabulous women who I’m proud and admire and who I Amazingly feel inspired by each and every single one of my sisterhood family! They without a doubt my biggest therapist!!
Finally I will close by saying……. anyone who is struggling right now who is reading this!…….. hang in there, you got this!
They never said it would be easy, but when you get out the other side… it will all be worth it in the end!!!!
I am 1 in 5,000!
I am a proud!
I am a warrior!!
Aysha
Aysha
Hiya I’m Aysha from London and I’m writing this to share my lockdown experience with you all!
We’ve been living in very strange unimaginable times lately, with a pandemic which affected the entire world!
This for me has been a bit difficult, as I lost my job but on the whole it’s been a blessing in disguise! It’s presented me with a beautiful new opportunity; I would not have had the chance to do so otherwise! This pandemic has caused me some more anxiety in some ways, but on the whole I’d say it’s made me more reflective, I’ve gained new skills and rekindled friendships and family bonds, which has been wonderful! This pandemic has also given me the time, to take it easy and re charge my battery! This has been very refreshing, as I use to lead a very hectic life before the pandemic!
I have had the chance to present many webinars for children, including story time, quizzes, games, arts and crafts and more. As a result, this has increased my confidence in public speaking as well as developing the skill to present online webinars, so that really has been the greatest positive for me!
During this time, I have also learnt to embrace myself and MRKH more! I suffer from body hirsutism, so have excess body hair and with the closure of salons, this has made me learn to accept this more and find ways to self manage! Before I would run to the salon weekly, but now I realise it is ok to be the way I am! The online MRKH zooms and webinars have really given me the courage to speak up about MRKH more and gain a deeper acceptance than I’d not been able to do before. Infact, it’s helped me so much that I’ve turned to MRKH advocacy and now help even more MRKH sisters, on a global level, so that’s been really awesome! I have in particular been helping Arab and Asian sisters.
Since I am not working and my parents and I are at home, we have been able to enjoy each other’s company and have actually been able to speak and properly connect, so that’s been very beautiful too. Normally, with our hectic lifestyles and going out and about doing our own various activities, we would barely get the chance to speak much with each other, despite living in the same house.
Luckily, I had a minor surgery, just before lockdown and all my appointments have been on telephone or online, so my hospital appointments have not been affected at all.
Finally, this pandemic has really made me appreciate every little blessing I have in my life from my health, to family and friends and just everything we used to be able to do so easily!
I hope you all have also developed some amazing new skills during this pandemic and have enjoyed reading this!
Sending lots of love❤️ and virtual hugs? to you all!
Manavi
Manavi
Meet Manavi ❤ who has prepared this piece and a sketch of her experiences in lockdown as someone new to MRKH, the community and is motivated to find out more about MRKH and what it means for her. Thank you for your courage to share and your wonderful positivity! ❤❤
“Being an extrovert
It’s really difficult for me to be in the home all the time….
But I’m happy that I’ve enough time to experience my own-self.
I’m 18 and MRKH is totally new for me and to be honest, I don’t have enough knowledge about it, I’m doing my best…..
I’m glad, I’ve alot time to deal with it also I have done my little research on it…..
I’m very positive and it’s not because I have to but because I’m like this….”A happy soul”
……..being MRKHer is actually fun, like I have a new topic to study and it has also helped me to find new friends overall the world……..
And the most important thing is..
‘I’m one in 5000’
And it feels like, I’m a celebrity…….”
Lily-Jae
Lily Jae
I want to tell my story.
I have MRKH and I am non binary transgender.
Being non binary means that I fall in between male and female.
I am neither and both at the same time.
Being non binary transgender has made my story different and I think being non binary has given me a unique experience with having MRKH.
During lockdown, I’ve had time to sit with myself and reflect on what all of this means to me.
After years distancing myself from it, I’ve picked up the non-surgical method of treatment and started again (after being guided well medically for over a year about 7 years ago).
For the first time, during lockdown, I’ve been able to engage with my treatment without it being overly medicalised – quietly and honestly, in a way that reflects who I am, as the person I am.
It’s been very difficult and will probably always be, as I do have physical scarring but being able to take back so much control makes me proud of myself.
I’ve been listening to a lot of music to understand how I’m feeling which is one of my favourite things to do, as I often struggle to share how I’m feeling.
‘The Cure’ by Little Mix is giving me a lot of strength and hope. Maybe it will give someone reading my story hope, too.
-Lily-Jae
Katie Morris
Kate Morris
Continuing our #mrkhandlockdown series this strong and empowered woman is Katie Morris. She used lockdown to share her story of MRKH publicly for the first time, making new friends along the way and finding strength and support from her friends and family.
Thank you for your wonderful piece
Just Breathe
Just Breathe
We are kicking off our #mrkhandlockdown with this beautiful courageous post that sparks so many emotions and is written as an anonymous diary entry, thank you for sharing this piece of yourself with the community
Just Breathe
“During the confinement…
I discovered that a part of myself was missing since I was diagnosed with the syndrome.
That meant that from age 12-14 and age 18-20 almost, it seemed, that I had died.
Something was missing. Something very deep. The authentic and spontaneous, joyful “me”.
I am 34 years old today…and I am so so very grateful to have had the opportunity to take time to
confront the shadows that were around me so I could make all the versions of myself, in the road
of life, walk hand in hand!!
The confinement has freed me from chronic anxiousness and culpability
I can feel light and full of love now I work on it and simple and from the heart.”
A
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