(Thank you for joining us from Inter/Act’s blog!)

I posted my first YouTube video on 9 January 2011. It was titled “The 5 Best Things About Androgen Insensitivity Syndrome (AIS)”:

I created this first person video series because I felt there was very little online that spoke to me on a personal level. My goal was to help others like myself feel less lonely by sharing my stories..

My videos are the first ones that come up when Androgen Insensitivity Syndrome is entered as a search term. It’s a bit scary but also comforting to know that if people search for AIS online I am the friendly face they’ll see!

The first video that comes up is me talking a bit about my story:

I know many people who are just learning about their condition come across my videos send me a message just so they can connect with someone else with AIS.

The viewing statistics for my current YouTube channel are not in their millions but I am very thankful for my 620 subscribers. My AIS videos have a combined total of more than 52,000 views and my highest viewed video was watched by just over 26,000 people!

I believe my videos have helped inform a great many people about AIS. Because I also do videos on subjects unrelated to AIS, the people who watch these quite often take a look at my AIS videos and contact me for more information.

I have had a small handful of uncomfortable exchanges with viewers but otherwise everyone has been accepting and well-behaved. Very few people have “freaked out”.

I often receive comments from male viewers like this one: “I just wanted to ask how many attractive guys have asked you out since you started posting these videos? You’re gorgeous and have a genetic disorder that almost makes you 2x more of a woman because of your body’s inability to respond to testosterone. If you lived in the states, I would marry you. lol.”

After a good friend was hurt by some of my comments, I had to clarify some of the “Relationship” issues I introduced in that particular video:

Sometimes I struggle to express what I really mean and end up saying completely the opposite which is very frustrating! I try my best to make sure this doesn’t happen, and I write myself notes which I try to follow but it hardly ever goes to plan!

The main reason I continue to record my videos is because I find them a release. They allow me to work through my own processing over different topics or subjects that I have been thinking or worrying about. I do it because I want to help others, but sometimes it feels like a form of therapy — one that allows me to speak anonymously to thousands of people.

I never really think about the fact that millions of people across the world could watch my videos. Also, I don’t worry that someone in my hometown could see them but I hope that if they did they would feel comfortable approaching me and starting a respectful conversation.

I was isolated for a long time. I needed to connect with others. Now I make my stories available to people in need of that same connection. It’s an amazing feeling. I will proudly continue my video series because I’ve learned that healing, education, and understanding begins with a first connection.

Connection > isolation.

Imogen

Inter/Act is a project of Advocates for Informed Choice (AIC). For more information on Inter/Act’s activities please contact us at inter.act@aiclegal.org.

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