Columns

‘You Should Get Out More’

“You should get out more.” These words of advice were recently given to me by a friend, a non-scleroderma patient. I am sure this friend  meant well. But on the cusp of my 20-year anniversary since my initial diagnosis, I…

Untouchable

At our most primal level, we all just want to fit in and be accepted. As a kid with pink and purple broken capillaries (called telangiectasia) sprinkled generously all over my deformed arms and legs, blending in with the crowd was no easy task. I’ve encountered lingering glances…

Scary Scleroderma Issues That Require Maximum Courage

Just the other day someone asked me about scleroderma. During our conversation I explained that I needed to have esophageal dilations regularly so I can swallow food without choking. After hearing about this procedure, the person commented about how brave I must be. This is a…

How to Nurture Your Confidence

Confidence is defined as a feeling of self-assurance arising from one’s appreciation of their own abilities or qualities. It’s a bright light that shines from within and warms others within your presence. But when your confidence becomes compromised due to unforeseen events, it can be hard to…

Who Cares for My Caregiver?

A very unusual event happened this week that prompted me to think hard about my role as a patient when I am being looked after by my main caregiver, my husband Max. Despite hardly ever getting sick, Max became very unwell with a nasty viral illness…

How Do Children Perceive the Disabled?

Children have a keen sense of awareness and understanding when it comes to those with a disability. They learn quickly, adapt to most situations, are not judgmental, and are openly willing to help those in need. Sometimes they say or do just the right thing to brighten up…