New here and finding my feet

Hi all,

Just joined after seeing the man, now my hero, with cystic hygroma who was on the BBC website this morning. I had not realised Changing faces existed until appeared on line. I am so glad he has spoken out about how the hostility has gotten worse during the pandemic. I thought I was imagining it.

I have a family history of cysts on my scalp. Mt latest count is 8. They are the size of ping pong balls.

It drives me nuts our sainted NHS has the temerity to call them "cosmetic".

But the bit that can either make me laugh or cry is the dumb reactions I get from some. I'm sure everyone has a story to tell, but here are my gems.

The guy so busy staring he forgot to steer his bike. He crashed it into a barrier across the road (i hope it hurt!)

The guy who offered me an evangelical prayer meeting at a bus stop (hey, no problems with this if it will help, but really?!)

But I had someone this week who told me straight I must cover up with a mask because "i have something wrong with me!" (like a cyst is covid, what a clown!)

and the person a while back who told me (while high on canabis) that he though I deserved to beaten senseless because "my head was bent!). Holy moly,

I wouldn't swap my lumps. They made me who I am. But I would easily swap some of the boneheads I run in to ....

Feel better for having written this. Looking forward to hearing others experiences in time. Best wishes to all.

[Gorgonite]

What a nice person you seem, sound so inspirational too👍

[Hidden in reply to Gorgonite]

Inspirational I don't know about. Grumpy, definitely!!

[EvaChangingFaces Partner]

Hi Hidden and welcome to the Changing Faces Community!

Thanks for your post and for sharing about your situation. It is really positive that others speaking out about their experience of living with a visible difference has helped you realise that you feel less alone.

I am sorry to hear about some of the reactions from others, it sounds difficult for you and is positive to hear you have felt able to laugh about some of these situations and that sharing them with our community has made you feel better.

I hope you find this a supportive place to share and connect with others.

Take Care,

Eva - ChangingFaces

[Hidden in reply to EvaChangingFaces]

Hi Eva,

Have to say. I've never felt alone. Speaking for me only I must say.

I DO though feel guilty. I feel sometimes awful that my wife has to endure the embarrassment of staring, I feel terrible about that.

I am lucky. My wife and I border on devotion. We just do. 18 years together has shot past. But I feel awful that she has to endure staring.....

We have a tip. she and I are both Mrs Brown's boys fans. If you've seen it, you'll know, but the phrase "that's nice!" has an alternate meaning.!! (rude!)

So if Mrs Circuitbreaker sees it, she now subtly lets me know with "that's nice!" in a Irish brogue (apologies to Irish friends), and then I know its going on and can deal with it. obviously that works for us, its a coded message between us we both understand.

Finding what works is hard, but we can crack this. Staring must stop.