Columnist Amy Gietzen (Scleroderma News) isn't always honest about her scleroderma symptoms
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’ve plastered a smile on my face and pretended everything was fine when, in reality, I felt far from OK.
Why do I do that? Why do I feel the need to put on a brave face and ignore what’s happening in my body and mind? Why is it more comfortable to lie instead of owning my truth — the painful, the stressful, and the miserable?
Lying to doctors
I discovered early on in my diagnosis that no medication or treatment could alleviate my symptoms completely. On good days, some of the pain and discomfort subsided, but on the worst days, the treatments would barely touch the physical discomfort traveling up and down my body.
I’d leave appointments so disappointed not to have a permanent solution to my ulcerated sores or itchy skin. Over time, I built up armor to shield me from the letdowns until I eventually became emotionally numb to the physical pain.
It seemed pointless to be honest with my doctors. Looking them in the eye and telling a bald-faced lie about how I felt quickly became second nature.
Lying to loved ones
Throughout my life, I’ve always been a glass-half-full kind of person. Not one to let my emotions overtake my resolve, I began to tell everyone who asked that I was “good” or “fine” and that there was nothing to worry about.
Did I actually feel that way? Hell, no! But I chose not to disclose the truth. After all, there wasn’t a tactical solution for my angst, so why worry my loved ones?
A new perspective
Despite my positive facade, internally, I felt suffocated with frustration. I was sick of being told that my symptoms were typical of scleroderma and that there were limited options for relief. Why was I going along with doctors and medical regimens if we weren’t sure we could fix the problem? What was the point of it all?
I carried on for quite some time with false bravado. Every day I’d paint on a mask of pleasantries, showing the world that life was A-OK — nothing could turn my smile upside down. Still, those closest to me could see the tiny cracks under the surface.
Feeling as if I had limited options, I stuck with my medical team as they worked diligently to help me find relief. After months of physical discomfort and emotional distress, my body finally started to respond to a treatment plan. I still wasn’t symptom-free, but by working with my team and educating myself throughout the process, I discovered which practices worked best to alleviate my discomfort.
I’ve come to the conclusion that I’ll never truly be free of pain or symptoms; it just isn’t possible for me with scleroderma. But thanks to my commitment to my care and my medical team’s perseverance, I’m now able to enjoy daily life.
Are there still days when I fake a smile and tell people I’m doing great? Of course — I think there always will be. No one feels amazing all the time, especially someone living with scleroderma.
But I’ve learned that it’s OK not to be OK. It’s perfectly reasonable to feel uncomfortable, stressed, or just plain crappy with this disease.
And I’m learning that I can tell the truth about how I feel. The people who love me will understand and care about me, no matter what.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Scleroderma Queensland Support Group