I have been feeling strangely unsettled as of late. My unease is not due to the current state of the world or a nasty flare-up. It is scarier than those things and associated with the next procedure for which I am scheduled.
My cardiologist has me lined up for a right-heart catheterization and cardiac conduction studies in a few weeks. I was describing the procedure to my friend who realized that I was feeling frightened.
Her query at the end of my detailed explanation surprised me. “So you’re feeling really scared about having that done to you?” My answer confounded us both. “Not overly. I’m a bit apprehensive, but that’s it. It’s something else.”
On reflection, I could understand why she’d assume it was the procedure itself that was the problem. However, I, like my fellow scleroderma patients, are used to undergoing frequent medical procedures.
We are subjected to everything from X-rays to tubes inserted via veins, arteries, and other orifices. Injections, surgeries, blood tests, oxygen therapy, feeding tubes, splints, mobility aids, physiotherapy, and many more have become realities in our lives. And we learn to live with it all. We develop a bizarre kind of trust with the medical profession; we hope that the results of these tests will give doctors the knowledge to help us.
While I have some mild anxiety about my upcoming procedure, my friend was bang on the money when she picked up on my fear about the test in general. So I embarked on a self-exploration journey to figure out the source of my fear.
I went through the entire procedure in my mind to attempt to unearth the focus of my anxiety. I noticed my apprehension kick in when I reached the end of the scenario at the point where the doctor was giving me the results.
Was I afraid he’d tell me there was something wrong? Strangely, the answer was no. I was fearful that he would tell me that nothing was wrong!
I realize that this sounds odd. As a chronically unwell person with a serious autoimmune disease, I want to be well. My scleroderma has not become my identity, and I do not want to remain sick to gain attention.
My real fear is that if they don’t find out what is going on, then I will have to continue living with the unbearable symptoms I’ve been experiencing. I might start questioning my disease experience and begin to wonder if I am going crazy.
My greatest scleroderma fear turned out to be that the people who are there to help me may not believe me. Consequently, if I am labeled a medical fraud, then I will have no support to relieve my symptoms, and I will stop believing in the possibility of an improvement in my quality of life. I’m afraid to lose hope, which is essential for me to live my best life possible with scleroderma.
It turns out my fear of being shunned by the medical profession as a fraud is my biggest scleroderma fear. However, now that I’m onto it, I am working hard at cultivating a determination to believe in myself and my disease symptoms. I’m driven to persist until I can find answers to my scleroderma complications.
I have realized that part of never giving up when living with scleroderma is to trust in myself and my disease experience. It’s a work in progress built on hope rather than fear, which is a much better foundation to start from when seeking answers.
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 Services, and are intended to spark discussion about issues pertaining to scleroderma.