the following is re-posted with permission from it's writer. it is about the positive effects of having scleroderma. special thanks to lidka for sharing her beautiful thoughts with us.
It is hard to think about anything positive related to scleroderma, but... if we forget about our pain, various debilitating attacks, the inconveniences, destruction of careers and sometimes relationships, which were precipitated by this illness, then there are some things which are definitely positive.
For me, the most positive outcome is that I have found new friends to whom I can relate and feel very comfortable with.
We understand one another better than those 'outside of scleroderma world', but also, I am no longer lonely with my disease. I found some remarkable friends through our scleroderma support group, whom I would not have had a chance to meet otherwise. Some are fellow patients, and some are their relatives, or volunteers who are selflessly giving their time to help us. And to me that expansion of my world is truly the most positive result of having scleroderma.
Scleroderma taught me to live every moment to the fullest, because I have now deeper awareness of ephemeral character of life. I value time more than before. I appreciate small good things happening to me, (like proverbial 'smelling the roses') more than before. In short, I am wiser.
The other 'positive' is of course a deeper understanding of people with other debilitating illnesses like MS, Lupus, UC, RA, various cancers, and many others.
In my case I also better understand people who are frail, weak, frequently in pain, which they do not broadcast to the rest of the world, but silently endure.
Before scleroderma appeared in my life, the phrase 'to be tired' had different meaning for me. It meant, I was tired, but still had some reserves to go on, and what was the best, after some sleep and rest, I could expect to get up and live like I did before. But scleroderma revealed to me how devastating the real fatigue can be, and taught me the true meaning of the expression: 'I am tired'.
Therefore I understand those old people who are visibly in some pain, who are obviously tired, who walk slowly, rest frequently and still smile apologetically to people around them and even more, somehow are able to find words of encouragement for younger, stronger folks, who are in some fleeting distress. Those old people who suffer themselves, have remarkable capacity to offer love and understanding to others, because they've acquired their wisdom not from some books, but at the Department of Suffering of the University of Life. I have some people like that in my social landscape and now, that I am ill myself, I am also more able to learn from them.
Scleroderma is a cruel but effective teacher of compassion, empathy and of greater understanding of the suffering of others. We are more forgiving now. True, we ourselves suffer, but we now are acutely aware of the enormity of suffering in the world around us... and as a result of this awareness we can sometimes extend to them, metaphorically speaking, a helpful arm or at least a smile. And this gesture makes the world better place to live for all of us.
tori... a merle girl