Scleroderma & Raynaud's UK (SRUK)
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Telling people

Hello , i have scleroderma and i am very shy. I don't have many friends (about 3) and now i am homeschooled and i don't really talk to them after i was diagnosed. I didn't ever tell my friends that i had scleroderma even though i knew they would still be there for me, i just was afraid to tell people because if i told someone then it would be real it would be a part of my life and it would be out in the open. I really do want to tell my friends but i have kept it a secret for almost a year now and i'm worried they will be mad at me for not telling them sooner. I only told one friend of mine that i was friends with since we were two, i only told him because i was admitted into the hospital on his birthday and i had kept it a secret even from him for over 5 months. How should i tell my friends and start to accept this as my life.

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Hello Jordan, it is difficult to tell people when we are ill, perhaps it may help to tell your friends at the same time, that way it is only the one conversation. Your friends will understand your condition more if you can tell them about this site, and you can all look at it together and I am sure they will be a great support for you, take care.

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Thank you for this i think i will tell them together next time i see them thank you for helping me out.

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Are you ashamed to have sclerodorma? What about us all. There is no reason to keep it secret. Is it that you don't know what to say? Look it up on the internet and show it to people. Be proud of yourself, look good. Good luck.

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I am not ashamed to have it , i just don't want to have it and i had a great life but now its all just doctors and infusions, i also don't know what to say like "hey i have a auto-immune disease surprise!" lol i just don't want to sound like i want them to pity me or anything like that and i don't want them to tell other people because its my personal life.

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You sound so much like me! I know how you feel for sure! Here if you need to vent. I'm in Florida

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Jordan, I am sure that you have carefully selected your friends over time and choose to hang out with people you enjoy being with. I would hope that they are there to support you, as you would be if something happened to them. We don't choose the bad stuff that comes into our lives...we can't control it. It is not your fault you have scleroderma, and it is certainly not something to be ashamed or embarrassed about. I would direct your friends to the SRUK website sruk.co.uk/ where there is some good information on what it is. When you have health problems and it presents difficulties with everyday situations you need your family and friends around you to help and support you (practically and emotionally). It can be hard to discuss your health problems, especially when you have something rare and difficult to explain. But, if these people are your friends they will understand and support you.

Good luck!!!

Lucy xxx

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Thank you for this i have carefully chosen my friends and i do believe they would understand thank you for showing me that if they truly are my friends they would be ok with it.

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A good way to bring it up is maybe to mention that you have to go to the hospital or have been to the hospital........

e.g shall we meet up some time soon, I'm pretty free except I have a football match on Sunday and I have the hospital on Friday.

That could be a good way to lead into the idea you have to go to hospital and see where the conversation goes from there.

From experience I have found people constantly question my gloves or look at me really oddly for being so well dressed / with a pair of gloves on and either they just get over it (the girl with the gloves) or they ask and I tell them and it's yesterday's news because although having a medical condition is a small part of you it's just a part of you there's also all the other bits of you too and none of those bits should be hidden away........

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that's a good idea ,maybe i could say something like "hey we should hang out sometime, but it cant be on Fridays because i have to get an infusion then"then however the conversation plays out.

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Hi Jordan, my daughter was 10 when she was diagnosed with SS. We told her friends about her illness when she was in hospital for infusions. She had to stay there for a month so we had to tell school as well. She received lots of cards and baloons and her classmates made a book of images of Harry Potter (she is a big fan) with wishes to recover soon which was very sweet and she kept looking through it and was very happy... She is a very popular girl and not bullied neither pittied for her condition. Her friends were supportive and I m sure your friends will be too. Best wishes. Svetlana

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What are infusions?

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She had steroids and chemotherapy infusions ☹️

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Do we all need it? Does chemo have anything to do with scleroderma or Raynulds? I'm in Florida where all they do is give u pills for it. I'm confused

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This is the protocol for Scleroderma here in UK - infusions first, then methotrexate for years. I think in Canada they only give steroids, not chemo (that is what I was told by a parent from there). What pills do you take?

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None for right now. I'm at the doctor now. I'm taking an herb Kallawalla. Thanks for the response.

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Hi, I'm not going to give a long winded thing of what to do but would like to say, tell your mates and most understand, those who don't want to know, which is rare, they're not really mates. Hope that makes sense lol. I'm having a get together/meeting in Birmingham on 01st August, depending on where abouts your are, you're more than welcome to come. It's nothing fancy, just an informal get together for a drink, eat if you want etc. It's right next the train station to make it easier for every one to commute in, and there are 4 of us at the moment. Partners/friends are more than welcome to take the stress out of it. Hope this helps somewhat.

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Hi Jordan,

I went through a similar thing. You need to realise that having scleroderma doesn’t change your identity - to you or your friends. Life will be much easier once they know as you won’t feel so lonely. Hopefully you’ll all get back to how you were, only you’ll be free of any guilt of not being around when you’re having treatment. Once you’ve all talked, you can get back to your friendships and it’ll have a whole new level of support and growing together. I don’t really understand the whole “if they can’t handle it they weren’t really a friend” thing - I think just try to understand if any of your friends struggle with it. You’re all young and it might be the first time each of you has had a situation like this. Everyone copes (or doesn’t!) very differently. I bet you’ll be pleasantly surprised. It won’t be making the scleroderma a reality, it’ll be a way of getting closer back to your life again. Xx

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Don't be afraid to tell them. If they are real friends they will stay friends, no matter what.

I tend to talk about it in the same way as I do about work or the weather... casually, factually (but not as often 😉 ) and make sure to end the subject with an optimistic and/or funny note (no point getting to emotional about it, is there?)

If anyone not too close to me asks about my gloves I just say that I have funky blood vessels and am keeping my hands warm. That normally closes it for most people. In my case the only people that tend to ask more details tend to be the ones with medical or scientific backgrounds or that have similar issues.

I wear this fleece glove which i cut up so it only has one finger left and the band around the wrist so it doesnt keep falling off. It really helps me when one finger is affected but I dont want to wear gloves for the whole hand. It looks a bit funny I guess. If someone asks about it I tend to joke that I'm setting new trends and laugh it off. Currently its my right middle finger and sometimes I just stick it up and joke that this is to tell people what to do if they ask too many questions. That normally ends the subject with a giggle 😉

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Hi Jordan, it takes a long time to accept an illness and some people never do, and that is okay, too. You decide who you tell and when. Take a deep step back and start exploring your feelings. Get a journal to record your feelings regularly. You can keep it simple when you talk to your peers. In time you willl know who it is safe to share your innermost thoughts with. Please contact me anytime you would like to. God bless you.

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Sounds like you are having difficulty accepting your disease and are scared. Maybe your friends can help you deal with your new reality. I refused gifts that would help me do things because it would make me feel disabled. I am not sick enough to need this yet! Lost support that way. Do it when you are ready to handle friends responses

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