What in the world is going on with my phone? I held up my cell phone to show my fellow clueless Generation X friend the loud alerts that were beeping through cyber space. Um, I’m not really sure what’s happening, but I think my story just went viral.
“Mommy, come sit next to me on the floor and help me do this puzzle,” my 2-year old son demanded. “I’m sorry, sweetie, but mommy can’t sit on the floor next to you. Let’s put the puzzle on the table. We can sit at the table and do…
Many people tell me they worry about how much pain I endure and wonder if having scleroderma hurts. I rarely address this because I don’t want others to worry about me. I also don’t want to bore anyone with a lengthy description of all my ailments. Have you ever…
Have you ever seen a stranger in distress and wanted to help them, but weren’t sure if it was appropriate? When we see someone on crutches, we know we should make an effort to hold the door open for them, or let them go ahead of us in…
I think the world would be a far better place if people could do two simple things: Ask for help when they’re in over their heads. Admit when they’re wrong and adjust their behavior accordingly. I’ve lived with scleroderma for more than 32 years and still struggle with swallowing my…
I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I am quite aware that my skin influences how people perceive me. Having been diagnosed with scleroderma at age 10, I’ve grown accustomed to people…
Having lived with scleroderma since I was 10 years old, I’ve grown accustomed to being asked intrusive questions about my appearance by random strangers. I’ve developed a pretty thick skin (pun intended) over the years, but there are still four seemingly innocuous words that continue to hurl me into a…
Stretch marks, belly flab, a double C-section scar, dark circles under my eyes for the next 18 years: the postpartum party gifts I was expecting as I was wheeled in for a scheduled C-section in 2006. It wasn’t my first rodeo: I’d had a C-section three years prior and, as…
Flower arrangements shaped like ice cream sundaes, new pajamas, stuffed animals, books, bracelets, and countless other trinkets. These are the gifts I remember receiving during the three-day hospital stay that followed my dermatologist’s diagnosis of juvenile scleroderma. But the fun didn’t stop with all the gifts! Oh, no way! My roommate and…
Editor’s Note: In Lisa Goodman-Helfand’s debut article for her column “Comfortable in My Thick Skin,” she tells her own scleroderma diagnosis story. Her experience with the disease began at age 10, when little was understood about scleroderma. Read about the start of her journey here. We’ve all experienced pivotal moments that are forever…
Get regular updates to your inbox.