Comments on: Photo Shoot https://livingwithscleroderma.com/photo-shoot/ Reflections on the Messy Complexity of Chronicity Sun, 28 Sep 2014 00:25:31 +0000 hourly 1 https://wordpress.org/?v=6.9.4 By: Evelyn Herwitz https://livingwithscleroderma.com/photo-shoot/#comment-3604 Sun, 28 Sep 2014 00:25:31 +0000 http://www.livingwithscleroderma.com/?p=2836#comment-3604 In reply to Kristine.

Thanks, Kristine. My heart goes out to you, living with this disease since you were a teen. It is hard enough to contract scleroderma as an adult, but dealing with all of the peer pressure of teen years must have been so difficult. Living within bodies that no longer fit is one of the most difficult aspects of dealing with scleroderma. Thanks to those whom we love and who love us, our true selves can still be known and treasured. Be well.

]]> By: Kristine https://livingwithscleroderma.com/photo-shoot/#comment-3602 Sat, 27 Sep 2014 14:07:13 +0000 http://www.livingwithscleroderma.com/?p=2836#comment-3602 Thank you for writing this blog. I loved your entry about the photo shoot. What you said is so true. It is difficult to grieve the loss of the physical self. Those loving individuals we keep near us make all the difference in the world. I’ve lived with Scleroderma for 28 years (since the age of 14). I feel like I was robbed of what should have been the best years of my life. It is difficult to look in the mirror or have pictures taken and see how the disease has ravished my body. I remember how I was before the disease hit. Who I see is now is not who I am. There is a genuine loss and grief in that. I get frustrated with people when their biggest image worry is their weekly gel manicure or the way their stylist screwed up their hair. I worry about how tight the skin on my face may get. I worry that soon I might not have any hair left to style. I look down at my hands and wonder what it would be like to have a nice manicure and pretty hands instead of the ulcers I battle. Most of all, I think that people with Scleroderma do a lot of suffering in silence. Thank you for giving a voice to all the things many of us keep inside.

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