Who needs to know about your MRKH?

Even if it’s been more than a decade since I was diagnosed with MRKH, I still find it difficult to decide who I want to reveal my syndrome to.

Being extremely skilled at overthinking, I know that I should probably spend less time on this decision and just tell people if I want to. But, see, it’s not that easy if you have MRKH, let alone if you don’t know how people will react to it… what will they think of me? Is it even worth mentioning? What do people care about my infertility and missing uterus when there are people out there missing a limb? And the worst worry of all: will they use this personal information against me? Will they share it with other people and embarrass me? Is it embarrassing? Will they think any less of me as a woman?

I know how uncomfortable these questions are- but believe me, they are very likely to busy your mind when you have MRKH. Some of them might seem ridiculous or far-fetched, and they certainly are, but it can be difficult to get out of this rut, particularly if you have no one to talk to.

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I think that I have become quite comfortable with sharing my syndrome with people who are interested in it (hence this blog), but at the same time I am still very selective. I decided to compile some of the things that have helped me overcome this internal battle.

  1. Before you tell anyone, take your time. Especially if you’ve just found out about your syndrome. Before you go on Twitter and blurt out to the whole wide world that you’re #infertile #MRKHwarrior, take a moment or two to process it just on your own. You might want to tell someone you’re very close to, such as a parent, sibling, friend or partner. Give yourself time to process it, but also to fully grasp it.
  2. If you are still at school, it might be difficult to hide it from your classmates and teacher. At least from my experience, I remember that a lot of medical appointments followed my diagnosis and I had to miss school on several occasions. That’s why I decided to share it with my best friend at school. My teacher only knew that I had been diagnosed with a syndrome but the medical certificates did not disclose everything in detail. I’m sure if you share it with someone you’re very close to at school, they won’t mind giving you their notes from the classes you missed- and extra emotional support.
  3. And then we have the family. Families are complicated. Or, as J.D. Salinger puts it:

    “I love you to pieces, distraction, etc”

    Even though you’re blood-related and the news might take over at the next big family dinner, I would only tell those people you really get on well with. When I was diagnosed, my mum was the first one to find out in the family. And even though, we were not on good terms (I was a melodramatic, sixteen-year-old girl and she was a burnt-out businesswoman…), somehow my syndrome brought us closer together. If it hadn’t been for her, I wouldn’t have gone through surgery. And I would have regretted that later on. Thus, if you have someone you can trust in your family and who, you know, will support you on what is to come, you should confide in them.

  4. And now we have to address the elephant in the room: your partner. If you are single, then there’s nothing to worry about. It’s up to you if you want to tell your flings. I know I wouldn’t because it takes me longer to open up to people. However, if you are in a relationship, the decision might be much more difficult. At the end of the day, the decision is yours because it is YOUR BODY.
    However, I’d still say that honesty goes a long way- particularly in relationships. Since this syndrome can affect one’s sex life, I think that there is often no way around telling your partner. Choose the right moment and make sure that you have all the time you need to discuss it in length and until there are no questions left. If this is all confusing to you, then chances are high that this might be at least equally confusing to your partner. I cannot foretell how your partner will receive it, and it might even impact your relationship in many ways. But hiding it might hurt you both in the long run, as the syndrome will influence your family plans anyway.

    Finally, it’s essential to mention that for every single relationship, be it your romantic partner, your family or your friends, this conversation might be tough and even hurt a lot. It might even be that you lose people who you thought would be supportive. There might even be people who will not be accepting, but that fear should not stop you from telling your truth. Because I CAN ASSURE you that there are also people you will be there to uplift you and catch you when you think you can’t go on. People who will lend their shoulder to you when you need a good cry. People who will spend the day researching about surrogacy because they want to have a family with you. And that’s when you’ll know that these are the people you can share anything with!




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