Walking into the room as a shy teenager my anxiety was at it’s peak. It was going to be the first time I was going to meet others like myself, others with MRKH. Like most girls with MRKH I had always wanted to know there were others like me out there and that I wasn’t the only one. 

I remember walking into the room and the first thing I noticed was that no-one looked like me. There was no-one of colour, nor anyone who outwardly appeared to be from my faith. In those few moments I found myself more isolated than when I first walked into the room.

There are many facets to a diagnosis like MRKH and for me two key facets were my culture and my faith. As much as I wanted to meet another person with MRKH I had also wanted to meet someone who would be able to relate to the cultural and religious obstacles I would be facing.

I listened to women openly speak about vagina’s and periods – topics I wouldn’t have dared discuss at home. I listened to women speak about how they met their boyfriends, or now husbands, how they shared their MRKH diagnosis, how it was accepted. I felt uncomfortable. Would people understand when I told them in my culture speaking openly about sex was frowned upon or that my culture would look down on a woman like me; a woman who couldn’t give her husband a child. Would anyone understand the faith struggle I was facing.

Feeling different in a place I was hoping to feel at home wasn’t easy. As a teenager already trying to find where she fitted in, to then add MRKH to the mix, it was far easier to only notice what made me different, rather than focus on what made me similar to those around me. In hindsight I realise I was being unfair, not only on myself but also the women in the room.

Although those women were now having conversations I would never think to, at some point they also would have felt hesitant speaking about the diagnosis, they too would have experienced all the emotions I was and maybe they still did. After all they were going through, or had been through, the same thing as me. They were like me.

Being a part of the MRKH community, for me is a reminder that I have MRKH, that I am different. It’s being part of a community I didn’t choose to be a part of, no-one did.

The support meetings stirred up a variety of emotions in me, ranging from MRKH feeling all too real, to feeling rubbish that I hadn’t made as much progress or that I wasn’t coping as others seemed to be. I carried a different sense of shame and embarrassment here, and to an extent I still do.

I have to constantly remind myself that every woman’s journey with MRKH is different. We all share the same condition but our experiences with the condition vary. I see girls younger than me and I often think ‘why can’t I speak about it like them’ or ‘why couldn’t I do what they have been able to’, ‘why do I still find it so hard’ – putting pressure on myself. Except there is no pressure, nor a timeline to feel ‘okay’.

Attending a support group, whether that be face to face or virtually now, still isn’t easy for me. It can be overwhelming. Whether that be because of MRKH itself or the anxiety I experience or feeling like the ‘new girl’ walking in amongst a group of close friends. I sit and listen but rarely say anything, finding it difficult speaking about MRKH out loud. I find it much easier to be behind a screen writing about how I feel.

The community is one which I can admit I have shied away from, almost having one foot in and one foot out. For me, perhaps a part of my healing journey is also knowing I have space in the MRKH community and I don’t need to feel embarrassed within the community. If I can feel comfortable to openly speak about MRKH with those who share the condition with me then perhaps one day I will feel okay in speaking out loud to others about it, without getting upset and without feeling embarrassed and judged, and most importantly without hiding.