Grieving the Old Me, Before I Was Diagnosed With Scleroderma
I wonder if the “old Amy” thinks of me as much as I think of her. I miss her terribly. She seemed to slip away from me without me even saying goodbye.
My heart aches for who she was and who I am now becoming. I didn’t ask for any of these issues. But here I am, becoming a newer version of my older self.
Being diagnosed with scleroderma, a life-changing progressive disease, entails a sharp learning curve. It’s like a runaway freight train flying down a steep mountain with no hope of slowing down.
My body doesn’t seem like my own. What happened to my body? You know, the one I was born with? The one that has completely betrayed me?
I have always preferred to be in control of my environment. Knowing what to expect and when to expect it was a comfort for me. Before receiving multiple autoimmune diagnoses associated with scleroderma, chronic bronchitis was my only “sick friend.” At least with chronic bronchitis I knew what to expect when I was ill.
Now, being tired is common. That’s a sign of adulthood, I’d tell myself. Not to worry, I’ll catch up on sleep another time.
But the fatigue associated with scleroderma is not just any type of fatigue. It is the supervillain of fatigue. It will sneak up on you and wrap your entire body in its clutches. It will pull you under no matter how hard you resist. Fighting is futile.
The unfortunate and terrifying reality of living with scleroderma is that its symptoms can interrupt life at any moment. As chronic illness patients, we must prepare ourselves for this reality. We can go from being excited about the prospect of doing something to having to be ready with a viable excuse for when our bodies say, “Nope, not today!”
Our lives are being irrevocably changed, which is an excruciating realization. A ton of guilt is associated with living our best autoimmune life. Guilt, fear, and extreme sadness are just a few of the emotions we experience.
And these feelings tend to be on the deeper end of the spectrum. My feelings of sadness weren’t the usual feelings of sadness. At that level, emotions can be overwhelming.
The harsh realization that my body was no longer my body led to deep depression. I went through the five stages of grief. Often, I mourn my former self, which is the hardest part of this journey for me.
Through all of this craziness, the stages of grief — denial, anger, bargaining, depression, and acceptance — aren’t always experienced in order. Some days I am depressed. On others, I accept my new existence. I am often angry and ask, “Why me?” Yet, I’ll add, “Why not me?”
I’m also stubborn, so more often than not, I’ll find myself floating in and out of the denial phase.
One thing that has truly helped me is finding a great support system. I still actively mourn the “old Amy,” but I have to make way for the awesome new Amy. I remind myself that I’ve been given this life to be a testament to strength and perseverance.
Life is hard. Living is not for the weak. My fellow scleroderma warriors, keep pushing, keep moving forward, and keep being a testament of strength and hope to those around you. We are in this together, near and far.
I know you get tired. I know it’s a challenge. But together, we’ve got this!
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.