How Pain Has Manifested in My Life With Scleroderma
When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of.
As time passed and I slowly grew into my new identity, pain snuck up on me in other ways. That four-letter word has taken on new meanings for me over the years.
One source of pain has been the rigorous process of searching for the right cocktail of treatments to slow my disease progression. Scleroderma can be pretty fickle in terms of how it responds to medications, so this has been tricky. I’ve swallowed hundreds of pills, undergone test after test, and had my blood drawn countless times. I’ve been admitted to the hospital for days on end and undergone surgeries and procedures that left physical, spiritual, and mental scars.
The treatments have caused side effects, such as constant fatigue and difficulty breathing, that affect both my physical and mental health. And while some have helped me combat my scleroderma symptoms, I’ve never achieved remission.
After working so hard to manage my symptoms and live a balanced life, hitting a brick wall in my efforts to slow or stop progression causes me emotional pain and affects my will to keep fighting. I used to wake up every day praying to live pain-free, but that wish can only be rejected so many times. Every time doctors tell me that another treatment plan has been unsuccessful, I sink further into a depressed state. My disease instability has taught me that good doesn’t always conquer evil.
Over the years, pain has made me question many aspects of my life — even the purpose of my existence. It has been especially challenging to appear perfectly healthy, even when I’m slowly dying on the inside. The stigmas associated with invisible illness hurt me deep down in my soul.
Some assume that I share my journey for attention, and that opinion can lead me down a rabbit hole of destruction. But I’m not describing how I’ve endured scleroderma to brag or pat myself on the back. I want readers to understand the devastation and pain that scleroderma has inflicted on my life. My journey with this disease hasn’t been cut and dried. I’ve often had to get creative about treating stubborn wounds, both physical and emotional.
But as I look back on the past two decades, I find that I’ve not only survived, but thrived through pain. Throughout my battle, I have stood with my head held high. My strength has come from my willingness to share my truth. Using my voice is one way I process my trauma.
By speaking out about my pain, I’ve been able to challenge stereotypes that young adults can’t be disabled and that scleroderma only affects older people. I have overcome adversity to become a voice for the scleroderma community.
So the next time you meet someone who appears healthy or happy, remember that pain can manifest in different ways for everyone. Other people’s journeys aren’t for us to judge; all we can do is bear witness and try to empathize.
It’s important to always be kind and recognize that unless we’ve walked a mile in someone else’s shoes, we have no idea what their daily life is like.
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.