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Hi all!!


Hope everyone is doing well. I just wanted to see how some of you deal with your loved ones in regards to your illness. I am 19yrs old and I am trying to work things out with my boyfriend of two and a half years. I find it a daily struggle helping him to understand what I am going through and the changes I am experiencing, as well as comforting him as he finds it very hard to deal with.


I was diagnosed 5 years ago with mixed connective tissue disorder (sclero, arthritis and polymyositis) and while I have a very positive attitude I am becomming very drained having to support him. I have even gotten to the stage where I keep new symptoms from him in order to not upset him. Does anyone have any ideas on how I can involve him without scaring him?


Thank u for all your help

Love Jess

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let him read stuff in here forums for example. He sees that you're not the only one. Tell how your doctors have been very supportive and trying to help you and you're getting the best possible care to calm him down. Let him be with you in the doctors office for example, cause if he's behind the shut doors his imagination probably does not let him to calm down, cause he really does not know what's going on. Let him ask, answer, ask yourself, let him answer. Everything that's bothering you or him. If it's hard to talk about, write. I know you two will be allright. Keep up that amazing spirit you have!


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Hi Jess,

Loved ones are very difficult to deal with. You are trying to figure out what is going on with yourself and on top of it you have to take care of everyone else. You just need to be honest and if he doesn't understand or he can only think abput himself then it is not a healthy place for you. You need to take care of you and stress is not good for your body. I would suggest talking it out and be honest!




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Jess,


I'm sorry you have this disease at such a young age. You're lucky to have a boyfriend who cares a lot about you. I have a very supportive husband. Here's the thing, supportive guys seem to be very sensitive as well, making their own feelings top on the list too.


I had to sit down with hubby and tell him look, I know you're scared, I know how you worry. But this is happening to me and I need you to be strong. If all you do is worry and look at me with big sad eyes, I won't be able to handle it. Scleroderma is usually not a fatal disease, it can be managed. I have a lot of problems, and I really appreciate your love and help and concern. I promise to tell you when I feel bad, and ask for help when I need it, but please try to not worry too much. We will get through this together. I love you.


Good luck sweetie,


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