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#1 cat



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Posted 18 March 2007 - 01:06 PM

Just wondering if any of you find making new relationships physically and emotionally draining. I seem to be found not social. People don't seem to understand. Honestly I don't seem to have enough energy for social comings and going a lot. At night I just want to stay at home and rest. Would like to hear from others about this. Cat

#2 HeatherT


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Posted 18 March 2007 - 02:20 PM

Hi Cat,
I moved across country and didn't know anyone this past July besides my husband and daughter. I found it hard at first, mostly because I was still new to my diagnosis and really tentative about how to discuss it with people but also I was unsure of my physical abilities. I too did not have the energy it takes to make new social connections.

I did end up meeting a lot of great people but, I had to actually work hard at it. I treated it almost like a job at first. Now, its much easier because I have established relationships, but even getting together for dinner or a drink can still be a little tiring, even with people I know well.

I'm not sure its the right thing, but I did not share my diagnosis in any detail with anyone until I got to know them a lot better. This is getting a little more difficult now because its a bit more noticeable these days.


#3 RememberingToSmile


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Posted 19 March 2007 - 02:37 AM


I can imagine what you are going through and am interested in hearing the advice others post.

I like Heather's advice. Currently, it takes a lot of planning for me to accomplish minor household tasks. Building social relationships could be like a full-time job and perhaps just as important, depending on individual circumstances.

Also, regarding Heather's observations... a year ago, I wouldn't have thought to, or been able to not talk about my health, especially when asked. I have always been that way.

Today, though, I can see the wisdom in caution and actually find myself hesitating during social interactions. People who have never been around chronic illness have such a range of pre-conceived expectations and reactions. How others react could be a whole thread of its own.

Best of luck,

#4 LisaBulman


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Posted 19 March 2007 - 03:11 AM

I lived in a town where I new a lot of people and most of them knew about me and what I was dealing with. I would only discuss it with people I knew really well and others new about me but never in detail. Well, then we sold our house and moved about 30 minutes away. Not a far ride, but I had to start over. My husband has it easy because he goes to work everyday while I make friends and then he just jumps in after the work is done and says "hi". What saved me was my kids. My older daughter went into first grade and my younger one was entering her second year of preschool. It was easy to meet people through the kids. It has been three years now and I have 4 really great friends that know everything about me, what I am dealing with and were there to get my kids from school and take care of them for me when I was going through chemo. If I am down and out and really feel bad, I know I can call one of them and they would come over and get my kids for a few hours.

I still don't tell everyone, everything but if you find at least one person to confide in, it could be a huge help!

Lisa Bulman
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#5 Elehos


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Posted 19 March 2007 - 05:30 AM

Hi Cat,

It's hard to meet people when you're in the house 99% of the time, which I am these days like it or not, and by the time I'm "presentable" enough to face the public, I'm too drained to talk much. Making conversation has always come easily, but I've noticed that the sight of a walker can make people look through you or away from you. Sadly, I've found that the majority of people out there (at least where I live--it can vary by location) don't want to deal with people that don't look 100% healthy and "normal," and it seems like they're scared to think that what happened to me could happen to them. Like facing their own mortality at a funeral, they can't cope and prefer to tune out.

I've been in the same place for 16 years now and don't have so much as one friend anymore since they stopped coming around once it was too painful to go out for coffee or off to the mall with them, or I just didn't look right, whatever that means. I wasn't inclined to talk about my health at all, so that wasn't the problem, but since it had become impossible to predict how Friday would be several days in advance, they gave up calling one by one and wouldn't even stop by unless they needed a favor or a shoulder to cry on. Go figure. Fine with me that people like that are gone, and there's no point in rounding up any more that will be the same, and I feel comfortable even with the isolation for the most part. The board may not be face to face, but it's comforting to have others that we don't scare off, isn't it?

Well, that's not to say we should stop looking for people around us--there are good ones out there, and it's best to take enough time to make sure they're not shallow. Until then, if you don't mind using the monitor as a friend's face, we're all here for you too!

Best wishes and a cyber-hug,

#6 ErinF


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Posted 19 March 2007 - 06:11 AM

Hi Cat,
What I'm finding difficult is that my friends don't really understand what's going on and therefore don't understand how scared (and tired!!!) I am. And my husband called his parents last weekend to finally tell them what's been going on, and there was a pause and they went, "Oh. So, are you going to watch the Iowa game?" It was like living in bizarro world. I've been feeling kind of icky for so long (just always complaining that I'm tired and achy) that most of my friends by now think I'm a total hypochondriac and therefore don't take me very seriously anymore. My husband did finally apologize for teling me over the last year that I was just out of shape and was turning into a whiner, so at least one relationship is improving :P
Do you know if there is a support group within driving distance of where you are? Maybe that would be a great place to start.


#7 Sweet


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Posted 19 March 2007 - 06:38 AM

Hi Cat,

I can totally understand your feelings. I don't do much in the evenings, however it took me years to get to that point. At first I was trying to act like a "normal" person because others didn't understand, didn't want to deal with it etc. Over the years, I have tried to explain it to many of those that are very close to me (which are a lot of people) I give many details to, to try and help them understand. Slowly over time, I quit trying to be the super hero and do more than I truly could and now - 7 years later, most people "get it" (not all that's for sure) and I just do what I know I need to do and let everyone else worry about whether they understand or not. It takes time to get used to all of this yourself, let alone be able to fully explain it to others.

Just do what you know you need to do and people will come around. If not....well their loss.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)