Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Suzi, I completely agree with you... I told my husband last night that I was beginning to find the list upsetting and trying to find a more positive one... this list has started to make me worry and wonder if some day I was going to look so bad I wouldn't want to leave the house... that certainly is not a positive aspect of a mailing support list. a group language > Group, > > I've been watching the disucssion about > " disfigurement " go back and forth. > > I've been a member for a while and, frankly, I wish we > would self-monitor our language. I've apreciated this > group as a source of good advice, support, and > meaningful information. I think that language like > " disfigurement, " " victim, " and " affliction " aren't at > all useful to the time we spend here. It brings > everyone down, collectively, and turns our sessions > into a pity party. > > I've already tried to do my part, telling the group > about something that happened to me that was far more > life-interrupting than anything that's ever happened > to my skin. I supposed I don't need to point out that > there's cancer, birth defects, and accidents in our > midst, daily. These things create victims, and can be > afflictions. > > Can we keep the mood as positive as possible to help > the folks truely struggling with depression and avoid > pulling down those of us who aren't? > > > Suzi > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Hi Group, I have never weighed in on any debates here, but these messages struck a nerve. The fact is, for many rosaceans, the disease will never progress beyond the mild stage. So, for those of you who have mild rosacea, please don't panic, don't obsess, and don't get depressed. Find a good derm, identify your triggers, take supplements, drink lots of water, eat right, and identify products that work for you and those that don't. Avoid harsh cleansers and irritants (such as AHA's & BHA's), as these can push mild rosacea into moderate rosacea. Unfortunately, there are some of us in this group who have severe rosacea, such as redness & burning, facial swelling, skin thickening, and rhinophyma. We face " disfigurement " every day. For us, this is no minor " affliction. " Sometimes people need to vent. Suffering is relative. What works for some members, does not work for others. Many members are depressed and need to work through this with understanding and gentle encouragement. I thank God for people like Jen Sandwell, Dr. Nase, and Matija. Their knowledge and compassion have given me and others hope. With knowledge and compassion, we can beat this disease -- even those of us with the worst cases. Advancements and improvements are being made daily, especially in the areas of lasers. Of course, healthy lifestyle choices can make a big difference, although this approach has its limitations for those of us with severe vascular damage or rhinophyma. We're all in this together. Some messages are " downers, " while others are more positive. But I believe the " downers " are just working through their grief and fear, as we all have a right to. Good luck to you all, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 I agree with you 100%!! Most members here are understanding. When I was first diagnosed, this was the only place where I could get useful info and emotional support. There were, however, a few who were rather harsh and critical whenever someone expressed their sadness and frustration. I think that was completely uncalled for, as this IS a support group. Ever since this group became moderated, though, I haven't seen any such flaming here. Thank goodness! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 I agree with you 100%!! Most members here are understanding. When I was first diagnosed, this was the only place where I could get useful info and emotional support. There were, however, a few who were rather harsh and critical whenever someone expressed their sadness and frustration. I think that was completely uncalled for, as this IS a support group. Ever since this group became moderated, though, I haven't seen any such flaming here. Thank goodness! Quote Link to comment Share on other sites More sharing options...
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