Commentary #12: The Woman Who Was Desperate To Become Blind (Body Integrity Identity Disorder)

I saw this story on one of my local TV stations’ websites on a Thursday afternoon. My eyes went wide; I couldn’t believe the headline:

Woman desperate to be blind had drain cleaner poured in her eyes, now happier than ever

Desperate to be blind?

Having drain cleaner poured in her eyes?

Happier than ever?!

I read the brief article, and then I immediately wanted to search for more. I wanted to try to make sense of this disorder that this woman had: Body integrity identity disorder, or BIID, for short.

These are the links I found when I Googled her name and BIID:

Her name is Jewel, and she’s 30-years-old. She wanted to be blind since she was six-years-old. She “felt comfortable” thinking about being blind.

According to Jewel, a psychologist helped her become blind – This person administered numbing eye drops first, then a couple of drops of drain cleaner in each eye.

It took about 18 months for the full effect. She has no contact with her mother and sister; she lied to them initially about how she went blind.

Despite some of her immediately family cutting all ties with her, Jewel says she has no regrets, and she wants to help others who are blind to live independent lives.

After reading these articles, I sat in my chair, stunned. I wasn’t sure what to make of this. Jewel insisted in her interview that she doesn’t think she’s crazy – She has a disorder. In addition, she says went public with her story to raise awareness of BIID and encourage those with BIID or suspecting that they have BIID, to seek professional help.

I immediately wanted to learn more about BIID. Thank God for the Internet!

I shared this strange topic with my friend Justin. He searched it as well and came up with this case:

David was desperate to remove his leg. He tried every method to amputate it himself. Finally, feeling helpless and feeling like there was nowhere else to turn, he called his best friend. His best friend was empathetic, telling David, ‘” … there was something in my eyes the whole time I was growing up … it looked like I had pain in my eyes, like there was something I wasn’t telling him.'”

According to this article, the first modern account of BIID came to light in 1977. A paper was published on “apotemnophilia,” or the desire to be an amputee.

And more stories and articles have been published since then. The following list contains a mix of scholarly articles, feature pieces, and resources.

Even though BIID is a relatively new condition, a lot of literature is out there. Many people have told their story. It is bizarre and strange, don’t get me wrong, but I have started to have a better understanding of this condition and this disorder. I have learned a lot by researching this topic for this post.

In first reading about Jewel, the North Carolina woman who wanted to be blind for over 20 years, she encouraged those suffering to seek professional help. That I definitely agree with.

These days, the stigma of “seeing a shrink” or seeing a therapist, etc., is slowly going away. I myself see a counselor on a regular basis. I was diagnosed with Generalized Anxiety Disorder (GAD) earlier this year. I wasn’t ashamed – In reality, I was relieved. I knew that I had been suffering, and I knew it was more than stress. Yes, I have a “label,” but I’m happy that I know what is wrong and how I can help myself. I’m also learning more about myself – My triggers, how to disconnect to calm myself down, how to make my “episodes” shorter and shorter, and so on. I’m very grateful that I’m not on medication to treat GAD, but I realize there are people who depend on medication every day to treat their conditions and disorders, and that’s definitely okay too. I’ve found myself to be a researcher and a reader on GAD, educating myself.

Back to Jewel – I’m happy that she wants to work with other blind people. She’s using her disorder to reach out to others and help them. I think that’s a wonderful thing. Her story is certainly strange, but I want to see her reach that goal. I hope the media does some sort of follow-up story in the future – I want to see her make good on her encouragement.

On the other hand, Jewel has received criticism as well. Those who advocate for the disabled and the blind have spoken out, saying that Jewel’s desire to become blind is like a slap in the face to those who were born blind or became blind from accidents or illnesses.

I understand that. I can understand that those who have desired to become amputees have also likely received criticism from people who work with amputees, and those who have lost limbs at or before birth, in accidents, from illnesses, from war, and so on.

What do you think? Did you know about BIID before reading this post?

Until the next headline, Laura Beth 🙂

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