It can be hard to find a positive in a diagnosis like MRKH.
Almost impossible at times.
The way I have shared the diagnosis at times, particularly in the early days, has not been well thought out. It has been a way for me to dump my thoughts without thinking about really what I wanted to get out of it or why I was doing it.
I do believe in sharing my diagnosis with others but I don’t believe in telling people for the sake of it.
I say this because I was that person. That person who would tell sometimes total strangers when drunk because it was a “coping” mechanism to do so. I’d also tell people I did know but then wonder the next day why I bothered. I don’t know if I was telling people for a reaction or for support or whatever because I wasn’t thinking out my reasons for sharing it, or what I was sharing. I was just trying to process all these feelings and quite frankly at the time I didn’t know how.
It really took me a long time to realise I didn’t have to tell those I was disclosing to everything and on the flip side I really didn’t have to tell anyone anything if I didn’t want to.
For me the problem I had after diagnosis was not the telling others bit but actually forcing myself to stop telling people for the sake of it so I could think more about why I was doing it. I felt like this was just my reaction to the situation, but perhaps there was a healthier way for me to process this bombshell and find a way forward.
So after being inspired recently to write about positivity around sharing a diagnosis I thought of how many branches and interconnections my “positivitree” had that actually helped me visualise the positive reasons of why I shared my diagnosis with others and how invaluable I have found doing so, despite the more rocky start.
When I was initially diagnosed I told my group of friends, individually, and in different ways, but I wanted them to know. They were my friends. We supported each other and I felt like a great relief to share this with them. In the haze of those jumbled first years of diagnosis, trying to process what this all meant, and the impact it might have, I think I then lost of sight for a little while of what the main reason was choosing to tell someone. Instead I went into “telling everyone” (which wasn’t really everyone but you get the point) mode – which was definitely much less beneficial for me when I was still trying to process it myself.
So thinking back to telling my friends and the value it had, and being more comfortable with myself and growing in confidence as time went by it led me to be so much more structured about how I then came to share MRKH with people both privately and of course now much more publicly through the advocacy work that I do.
I came up with some points about why I feel positive about sharing MRKH
- It is part of who I am that I want people close to me to know. I don’t do it for pity I do it because it is this part of me that has changed my life but absolutely does not define me
- It helps my friends and others understand that there are certain triggers that I may, or have, found difficult
- It has helped others be more open with me, bringing a sense of comfort, compassion and relatability
- It has allowed me and and others to feel more aware of each of our feelings – you never know what is going on with someone under the surface
- It has provided different perspectives and suggestions and support I could not have imagined
- It helps to raise awareness
- It has helped me connect with people on a different level
- It has made me aware that I don’t have to share everything to feel comforted or supported
- It has helped me and others be more comfortable talking about sometimes sensitive topics
How you share, why you share and what you say is a completely personal thing. You can be an advocate privately as much as you can publicly. It is not all about being loud and proud about it as being comfortable with who you are and finding what works for you.
Even more important than all of that, as I said before, is thinking of why you want to tell someone. Are you looking for support, comfort, advice and does your reason for telling them change exactly what you say to them?
I don’t know what my life would have been like without MRKH but quite honestly I wouldn’t change the fact I will never know, for anything.
These are my branches, promoting positivity and hope that have helped me enormously in navigating how I approach disclosure and why it has been such a big component of my own personal acceptance.
You can read more of Charlie’s blogs here