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This is one of the best explanation as to why not telling the “whole truth” about BIID is often a good idea that I have seen in a very long time. Thank you

This is a very important and exceedingly complicated issue. There are so many variables, including our own emotional baggage, our life circumstances, the nature of people we interact with. I agree with Elisabeth; you just know when and what to tell. It will be different for all of us.

I come to the issue with a huge amount of emotional baggage from having grown up intersexed. It was clear from my parents that my genitalia and my gender issues were taboo subjects never to be discussed with anybody at all. Eventually I took the daring step when I was twenty one and told a friend about it (specifically the unusual nature of my periods). She was completely kind and compassionate. Where were these supposedly hideous consequences? I felt I had been lied to by my parents. They were wrong. At this point someone with a bit of internet sophistication can find pictures of me sitting on the intersex float in the gay pride parade. It’s not in any way a secret. The world did not collapse around me. Not only do I feel better for this, but I also believe I have a moral obligation to be open about it. I want people to be able to say “Oh yes, one of my friends is a hermaphrodite. She’s nice.”

This experience colours what I do with BIID. My psychotherapist suggested that I would feel better emotionally if I could be open about it. He was right. My experience is that the positive benefits of disclosure far outweigh any negative consequences. I feel a moral obligation here too. Since I am apparently someone who can disclose about BIID with relative ease, then I should do so. I want people to be able to say “Oh yes, I know someone with BIID. She’s nice.”

Dear Chloe, you set a good example and a high aim. And you give me courage. What you write makes perfect sense. Thank you.

I would like to start by saying I am very glad you have had such a good relation with the people you have told. I hope that more people may eventually come to the conclusion that BIID is not a sin, to use your words. I have had some bad experience with people I’ve told, but that is just because they don’t really understand very well (which they told me) so I forgive them for that. I do wish that I hadn’t told a couple people (mainly dad…), and I also think about telling others, but I agree in that you should only tell people when you are ready. I wasn’t ready to send the email to mom, but I think she has come to accept it (key word: accept, not agree) and her frustration was something I said in the email and not the idea itself. I have told someone else, who while not agreeing, is at least willing to have a level conversation with me about it, again, the reservation coming from not quite understanding. I am not surprised they don’t get it, the concept of need of a disability, especially of paraplegia, which we are almost spoon-fed to believe is one of the worst things that can happen to you ever, is totally alien to them. I asked her if she wanted to hear something about me, that there was no way she would understand, and to (please) not tell anyone, and she said yes. Other than Sean, this person (a cousin of mine) is the only one who I can talk to about BIID without pressure, and it feels wonderful. The importance of telling someone who can provide that kind of emotional support is tremendous, so when you are ready, and you have someone who you can trust, I highly recommend it.

So for all of you who are out there and just reading this, but are completely alone, tell when you are ready to the right person, and it will make a world of a difference.

L

The interplay of sin and BIID is intriguing. It does not cross my mind that there could be anything sinful about having BIID. I’m not going to try to convince anybody of my point of view, but here is my perspective. I prefer to accept my gifts with grace. For me it would be a sin to repress BIID, a sin to deny one’s true nature, a sin to be inauthentic, a sin to reject the lessons of compassion and understanding that BIID can provide, a sin not to use BIID as a means to do good, a sin not to embrace BIID as an expression of the divine universe.

Amen to that, sister!

OMG. We need to talk.

Here was my twisted answer to this question that tortured me for a year and a half: actually physically create real nerve damage so that I could truthfully say that I had nerve damage. Never mind that self-mutilation is itself a sin! I did not tell my confessor about BIID but I did tell him that I had a mental illness and that this mental illness led me to self mutilation and deceit about the cause of my injury. His response was that the Lord knows my motivations and that He is merciful. I thought that was ambiguous but he did give me absolution.

As for the self-mutilation, I find that I am sorry for offending God, but that I am unable to regret the act beyond that. I hope that’s enough.

Talk about a tangled web!

Bottom line, it’s none of their business. Nicer ways can be found to say it, but that’s the truth of the matter.

Another way would be to tell them the truth in a way that might rather shock them and they would regret that they ever asked. This would be my answer, haven’t tried it yet though:
“I have a rare neurological disorder that makes walking an agony. It’s rarely fatal but there is no cure for it. Using a wheelchair makes my disorder manageable, most of the time. Any more questions?”

“Neurological” could cause people think that you will end up without nerves soon – totally paralysed, a brain becoming a sponge…

@Elisabeth, I like your idea :)

@Phil, let them think whatever they want. You could also say it is “non-progressive”.

I think all anyone really needs to say is that one has an unusual condition (no like) that makes walking difficult (true enough, and no need to say why). If they pry, shut them out. It’s none of their business.

Oops, meant to say “(no lie)” not “(no like)”. Wish there was some way to edit posts.