A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly. When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold…
After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?” While many of the feelings I…
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable. But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times…
I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a…
“Wow, you were just discharged from the hospital? You look healthy to me.” I can’t remember a time when words have hurt me more. According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as…
Humans have known war almost since humans existed. Thousands of civilizations and religious evangelists have started wars to conquer their opponents and live to tell the tales. The difficult journey of living with scleroderma resembles preparing for and engaging in war. We build our bodies and minds to face…
As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might offer. Many adults are probably excited to ring in the new year in style by going out on the town or enjoying a few drinks with friends. Sometimes I envy…
The holiday season is often a happy time. Giving gifts, spending time with family, and celebrating with food and conversation bring joy to many people. But for me, the holidays bring longing and envy. Christmas has always been significant for my family. While we’ve always held parties on Christmas Eve,…
Many people have come and gone in the years I’ve been battling scleroderma. However, the friends and family members who stuck with me have taught me some valuable lessons about relationships, vulnerability, and strength. Before I was diagnosed with scleroderma in 2001, I was an extrovert, the life…
It’s beginning to look an awful lot like the holidays! Everywhere I go I see festive decor and signs for holiday sales. I guess I shouldn’t be surprised to hear ”Jingle Bells” and ”White Christmas” on the radio in November. The hustle and bustle of the season often brings long…
Get regular updates to your inbox.