Living with a chronic disease such as systemic scleroderma brings huge changes, and my life is different from what it was like before diagnosis. These changes generally happen over time, matching the disease progression. For some people, their changes are noticeable and they are aware…
Systemic scleroderma is a nasty disease with many complications that make my life difficult. Because of scleroderma, I have to endure diagnostic procedures, pain relief management and am required to take many medications. People often sympathize with me, but sympathy and empathy are different things, the latter…
“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…
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…
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…
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…
In a few weeks, it will be my 20th anniversary of first hearing those life-changing words: “You have scleroderma,” followed by, “and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15 months, maximum. Forget being a barrister.” I have written about…
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…
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…
Disabled people are a minority group, as are those with rare diseases such as scleroderma. Just lately, I have read many anecdotal stories of people just like me being singled out, bullied and ridiculed, whether it be about our spotty facial…
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