I'm waiting for some test results, which I'm worried about, and a family member told me, angrily, that I don't have enough evidence to be worried about it, until I find out whatthe results are. When I said I wouldn't talk about these things if he didn't want me to, I was told I was being childish, and that was my choice.
All along, I was quite matter of fact when discussing test results/possible implications/the fact that the results might be ok. I haven't even discussed the extent of my worries.
I was also told I was being manipulative when I tried to explain that I felt guilty for worrying this family member with my health problems. And he kept walking away from me and wouldn't discuss it any further
Another family member told me I was being negative when I discussed treatment options for another symptom (I wasn't being negative - just realistic about what may or may not work).
I know that this may be due to them not coping well with this kind of information, and being worried about me - although I have always been under the impression that they coped well before, but I don't know what to do for the best. I feel like not volunteering any information now, unless they ask, but I have had mixed messages - that they get angry at me for telling them, and angry if I say, ok, I won't tell them.
I know this kind of experience must be very common for other people here. What kind of strategies have worked best for you? Any advice would be so gratefully received! Thank you so much for your help with my questions.
it is extremely difficult because Scleroderma is so unpredicatable in terms of how fast or slow it progresses. I have my bi annual heart and lung function tests and blood tests. To be fair i have stopped talking about my scleroderma because people just don't 'get it' and think i'm exaggerating when i talk about the worse case scenarios. . I know from the symptoms i have that my condition is slowly getting worse. My hands are very tight and are constantly cut and sore and ulcerated. The rheumatism in my joints is evident through the lumps and bumps and pain and i could cry some days. But...because on the whole we look all right then that is what people want to know - that you're all right. i tend now to talk to people who have raynauds or scleroderma and mention my illness very little to family. if and when the day comes that i am told the illness is progressing faster then they will have to face up to it. but until that day i am happy to discuss my fears with people who know what I'm talking about. i hope all goes well for you
Thank you for your reply. I'm sorry that your condition is slowly getting worse. I tend to look alright too, and have always been grateful for that, but it has its downside when people can't 'see' what's wrong - as a lot of symptoms are internal. And I think that most of us know the worse case scenarios as we are realistic and educated, but of course, we try to remain positive and hope they won't apply to us. I hope you can get some relief for your sore hands. It is good to speak to people here who understand.