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.
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.