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Post by jeffn on Jul 22, 2009 6:29:13 GMT -5
How many of your friends and family really "get" SD. In that they understand what you have and at least some of its ramifications. I'm not looking for exact numbers but just a general idea of your experience with this.
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Post by jeffn on Jul 22, 2009 6:39:03 GMT -5
My experience is very few. My immediate family does and is very supportive. Outside of my wife and son family wise I don't think most "get it" even a little. As to friends and acquittance's some do MOST don't but the ones that do have been very curious and supportive. There does not seem to me to be much middle ground with this, people either do or don't get it. With people I don't know that well it really does not matter to me. I am not looking for sympathy. With people that have been closer to me I do find it somewhat frustrating that they don't understand a little more about SD and SDs effects than they do. I have friends with heart issues and when we go out I don't suggest that we go to the Tuesday night "Fried Food Blow Out" at Chez Cholesterol. Presently I am in good shape and can do most of what I used to with some moderation so most people probably would not notice any limitation. But the friends and family etc. that were around when I was really going through all the SD "stuff' I think would have some sort of clue but in practice I have found that most don't. Again I am not looking for sympathy here just an observation.
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Post by steve201 on Jul 22, 2009 8:07:07 GMT -5
Jeff
out of all my family..only my oldest sister actually understood I only had a few months at the time to live.....my wife obviously got it.....my other family didn't get it....and still don't understand it...
most of my friends and work mates got it really quickly and stood by me during the whole thing.....
it's amazing that most of my friends got the idea of SD but my other family members didn't...
Steve
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Post by joannern on Jul 22, 2009 8:23:21 GMT -5
My partner gets it. She and my sister are the two who understand the best as they see the struggles I have on some days.
My friends know something is wrong, but don't really understand much other than I have lots of specialists.
I travel with a group of women to rather far off places. I can't always keep up but I go and I try. They were so very kind and supportive. They rallied for me on a month long trip in 2007 to Kenya ,Egypt, Jordan and Israel. You can't believe the experience until you have seen some of the pyramids and temples in Egypt via wheelchair!
I leave for the Galapagos mid August. I am hoping for a large handicapped accessible turtle!
;-) I figure I will go while I am still somewhat mobile albeit very slow and not always graceful but I am upright, thank God for pain meds.
Joanne
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Post by jeffn on Jul 22, 2009 9:02:41 GMT -5
See now I have this mental image of a turtle with a handicapped seat thing on top or maybe a ramp to load a wheelchair. Thats going to stick for a while. ;D
Good one Joanne
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Post by steve201 on Jul 22, 2009 9:41:56 GMT -5
I wanna know ....does the Galapagos have handicapped turtle parking??? ;D ;D ;D
Steve
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Post by joannern on Jul 22, 2009 14:15:03 GMT -5
I am not sure about the parking but I will bring my handicapped placard along just in case!
Can you see it now, there I will be with my gloves, handwarmers and dressed for the arctic as it wil be winter there that means 65 -70 degrees ( cold to me especially near water) atop my turtle. Hope his heater works. Don't think Darwin would believe it!
Joanne
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Post by ndpblake on Jul 22, 2009 16:58:30 GMT -5
Joanne, I love your lifestyle. It is wonderful and an inspiration. Here I am worried about my son and his wife going to Egypt soon and their safety. They are young and not handicapped, so I shall stop worrying.
In answer to jeffn's question about friends and family "getting" SD, it is a lost cause because at the ages of my friends and family, who have their own horrible age related problems, Scleroderma is just too complicated, and they don't want to hear it, and "That's the way it is", as Walter Cronkite would say. And the younger people certainly don't want to hear it. It is not sympathy we want, it is just an understanding of the disease.
Nancy
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mumof3
Junior Member
Posts: 51
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Post by mumof3 on Jul 22, 2009 18:04:28 GMT -5
While my husband and mother and some family members and close friends are sympathetic, I don't think anyone truly "gets" it. They do ask me how I am feeling. But I don't look any different than I did before I got sick (I don't have any skin changes). I did have a lot of heartburn and muscle and joint pain (which has greatly improved on AP) but I still don't think they truly "get" it.
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Post by christel on Jul 22, 2009 18:32:34 GMT -5
I must agree with mum of 3. Although my family knows I have something, they don't really get it. Although my hands are my biggest issue, the stuff that is wrong that doesn't show is just as good as not even there. It's a funny thing to try to explain, and I will say again that people just don't understand all the ramifications of what such an illness is or does.
Which leads us once again to the conclusion that we must take care of ourselves!!!
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Post by sherion on Jul 22, 2009 19:12:05 GMT -5
I agree with mum and christel. I don't think my family and friends really 'get it'. I think my hubby and one daughter kind of understands, even though I don't think they truly understand the fatigue and constant pain. How can you feel ok one day and the next cannot get up off the chair. My skin is not too much involved and I don't have the finger curvatures so all my problems are invisible and they seem to think if it cannot be seen, then it's NOT there.
Close friends are sympathetic but I beleive are totaly at sea as far as understanding.
Sherion
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Post by isobelle44 on Jul 23, 2009 19:05:04 GMT -5
I just have to say i like these shameless troll things. I learn alot reading them. I have generalized morphea, its certainly not like what you have but all in all my family dont understand. I do have a friend who had lymphoma who totally undertands. Although, where i have the spots i keep most covered so people dont see them and i have kept my sense of humor so to them im probably the same and what is the reason she goes to mayo? Im sure they think that way. Sharon
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aajmom
Junior Member
Posts: 76
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Post by aajmom on Jul 24, 2009 12:14:57 GMT -5
I agree with Jeff- either people do get it or they don't- there's no middle ground. And I agree with what Sherion said- if they can't see it, then it must not be there. I have a very understanding and supportive family and a close circle of friends who do seem to get it. However, I know that I have lost friends since my diagnosis- several who just weren't able to handle my limitations and some of the type who seem to think it's "all in my head". Certain people who I thought were friends couldn't handle making any changes in our lives to accomodate my needs- and so we no longer are in contact. On the other hand, some of my friends are SOOOO wonderfully accomodating and I feel blessed to have them in my life. I feel like these people are a "gift" to me and I always tell them how thankful I am to have them!! So.. I guess it's been a real mixed-bag for me. Honestly though- the people who couldn't handle it--- well, I'm better off without them !!  - Adriane |
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Post by jeffn on Jul 24, 2009 17:13:08 GMT -5
After reading the above replies I got to thinking about friends now and friends then. I have moved away from contact with certain people now that I think about it. Not so much that they would not adapt to me but I find I can't deal with some of their goofy questions and comments. I have one friend that nicely suggested a hunting trip to the midwest. We would go out for Pheasant at one of those camp deals. I used to hunt with him a lot back in the day, when I used to hunt. I just got out of the hunting habit years ago not because of the SD. Anyway he wanted to drive out from New England and then do the hunt then drive back. I told him I would love to go but was pretty sure I could not do the trip. I'd just be a puddle probably by the time I got there. Tried to explain but he could not get his head around me not being able to ride in a truck for 24 hours and then hunt for four days then sit in the truck for 24 hours again. He kept calling me to try to convince me. Nice gesture but drove me nuts. I finally said I was not going to talk about it any more. He finally got that.
I guess it just is what it is. Looking back I find that I am not all that upset about having moved away from some of these people, perhaps it was more habit than anything else. The friend with the hunting trip is still a friend and I spoke with someone else who had done a simialr trip but did not drive out they flew. Their version I could probably do as you just hunt the morning. Maybe some day.
I guess we just adapt and do what we have and do and that is probably a good lesson.
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Post by antonietta46 on Jul 24, 2009 17:16:01 GMT -5
Hi Jeff,
Funny, My family and my coworkers get it since they new the me before the scleroderma they were there during and see me now. Only one family member My brother-in-law (he's a moron anyway-lol) that doesn't get it, but he's not important anyway -lol
Antonietta
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- Adriane