Scleroderma & Raynaud's UK (SRUK)
6,793 members3,213 posts

What DO you look like?

In my case, a tall, thin skeleton with lots of layers of clothes, wrist warmers and often gloves or mittens (even in summer). I notice that many posts of fellow Scleroderma sufferers express anxiety about the way they are looking - or may be perceived by other people. I often feel apologetic at the supermarket checkout while I fumble for change with my crippled fingers or have difficulty bagging the goods. This is an additional source of suffering - I guess it is a sort of displaced rejection anxiety: I imagine people are thinking critical and uncharitable or impatient thoughts.

Best not to do too much negative imagining. We can never know what other people are thinking. I want to be free from unproductive anxiety, and to have the freedom to be myself without reference to what I *imagine* other people might be thinking. Let them deal with their own stuff about disability or body image. I am not going to twist myself into guilty shapes on the basis of other people's reactions to me, actual or imagined.

If anyone does ever say anything uncharitable to me - and so far no-one ever has - I'll tell them about my health problems in so much intricate detail they'll wish they never opened their mouth.


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I don't look any different to before my diagnosis. Short, muscular, long hair pretty face. My hands are scaly and dry but luckily weightlifting messes up all my friends' hands too so it goes largely unnoticed. The cold/agonising hands in winter make me hate handshakes at work but I turned it into a game - I watch their faces to see what they do - tells me a lot about their personality hehe


I've recently developed Sjogren's as a little buddy to my scleoderma. Up until now I've been fairly lucky - my Raynaud's started off crazy but has settled now so only the occasional weird look credited to that. Now though, with dry eyes, I can't wear make-up. I've never been huge on it but have always done my face for occasions. I also have to wear what I'm calling fly goggles in any kind of breeze, and especially in the car.

Most days I do well remembering that we are the sum total of our parts, not just an image presented to the world, but some days are very hard. Doesn't help that this new development arose just when normal signs of aging are really kicking in.

I find it ties in strongly with the mental health challenges just having a chronic disease brings, and approach it the same way. When that doesn't work, I just try to embrace my weirdness. And when all else fails, I have a good cry and get it over with...until next time. :)


i am delishously plump and 61 years old and proud. Don't worry about how you appear to others just take good care of yourself. i personally find staff at shops to be very kind and helpful when my fingers are like blocks of ice and can pick up nothing. i get help with packing and it takes as long as it takes to find the money.

I have never had anyone showing signs of impatience at the checkout and i don't apologise for my difficulties.

i do sometimes share some information with people if and when appropriate. I laugh at myself and explain that I am just strange when my face is dripping with sweat and fingers and toes cold, blue and numb.

I enjoy life, laugh a lot and take care of myself as much as I can in spite of the many health challenges.

You be good and kind to yourself, ask for help when you need it. You will find folks to be very kind and in no way judgemental. Don't be afraid to share your problems.

Most people are not aware of the problems we have and are happy to listen and learn.

All the best for the future.



Hi Tall-Tim

Amen. I totally agree. My focus is to feel as well as I can mentally, emotionally, spiritually and physically. Staying positive as possible is very essential, for we endure a lot and face some challenges with theses diseases. I enjoyed reading your outlook. Thanks a lot. It's encouraging.

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I am beginning to think it's OK to look like something out of the Addams Family. However I haven't begun to behave like that - yet.

I met a woman today in Oxfam with bad Raynaud's Syndrome in her fingers. She was complaining how bad it was, but she wasn't wearing gloves or wrist warmers. She said she tried two NHS prescription drugs, but they'd given her headaches. I told her about Sildenafil and she perked up. Maybe I've done some good today.


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