Fibrous dysplasia.

[Leeds1968]

Hi Everyone,

My name is Sean and I’m 54 years old. I live up in north London.

I was born with fibrous dysplasia/McCune Albright Syndrome but wasn’t diagnosed until I was 30 years old.

I have at times suffered from mental health due to my disability. The stigma attached to looking different has been immense at times throughout my life.

My condition is misunderstood and not a lot is known about it, mainly to general health practitioners.

I’m a gay man and I’ve found it hard to meet people and have a relationship with, mainly because I just look different and people don’t get it.

I’m a sensitive guy and have feelings too just like anybody else. I have a dark sense of humour..my best friend will say? I hope I’m not thinking about what I think you are thinking!! and we just laugh as we’ve known each other for over 24 years now.

I hope to share my experiences with others that are affected with looking different and maybe learn a thing or two.

Confidence isn’t easy, having somebody else to talk with builds confidence.

Seán

[Solocat Community Ambassador]

Wellcome aboard Leeds1968! I hope you can make good friends here. We'd like to hear more from you. Dark humor is definitely good, any form of humor in fact.Hope to hear more from you soon!

[CarolinChangingFaces Partner]

Hi Leeds1968 Welcome to the Changing Faces community. Thank you for your post and sharing about your situation.

I am sorry to hear about the stigma you have experienced and the impact this has had on your mental health. Lots of people in our community also share with us that they can finding meeting new people and intimate relationships difficult. I hope you are able to use this space to connect with others who may have had similar experiences and that our community is able to share with you things they have found helpful too.

Take Care

Caroline – Changing Faces

[TinkysMom]

I have fibrous dysplasia too and feel the same way as you do about meeting people, not just romantic partners but new friends. It is very hard emotionally and I hesitate to go meet new people because of it.

[Circuitbreaker Community Ambassador in reply to TinkysMom]

Hi TinkysMom, great to have you aboard.

Everybody here will have the same kind of reservations. With any kind of visible difference, you get (unfortunately) to experience the darker side of human nature.

That said, you should not have to to hide. I don't. Yes, I get stares from my cysts and tumours, but frankly, f--k it! I get to have a pretty good life. I get out, I travel, I love my work, i enjoy my music, I get to see some great animals and I get to go to some cool places (just back from Jersey!).

the fact you feel this way is not unique to Fibrous dysplasia. It is unique to one thing only. Other peoples attitudes suck!

That is what we need to change! Not you, not for a second.

It is tricky learning to carry on regardless. It can be done, bit yeah, its tricky.

But just remember the problem is never at your end.

[EvaChangingFaces Partner in reply to TinkysMom]

Hello TinkysMom and welcome to our community! Just wanted to say thank you for sharing your thoughts here about the difficulties in meeting new people in life when living with a visible difference (and in general)! At Changing Faces, we hear often from people that they are nervous or worried about meeting new people, dating and intimate relationships as having a visible difference can mean that you also feel more nervous about your body which can put additional pressure to any social situation.

It might be helpful to keep in mind that our thoughts are often based on past experiences and if you have had a negative experience in the past, you might expect the same thing to happen again but that won't always be the case as every person is different and will react in different ways.

To echo what Circuitbreaker said the most important thing is to enjoy your life for yourself!

Take care,

Eva - ChangingFaces