Words that let me stop fighting my grief, and begin feeling it

The months that followed my diagnosis of Parkinson’s disease were heavy and painful for both my head and my heart. My body had malfunctioned catastrophically, and my mind was suddenly expected to process the enormous emotional fallout. Every day seemed to bring another loss, another fear, another question I could not answer. At times, it felt as though my brain would implode from the sheer pressure of all the emotions I was processing.

Although Parkinson’s is well recognized as a condition with both motor and nonmotor symptoms, public perception often focuses on the physical changes that people can see. Tremor. Stiffness. Altered gait. Yet beneath those visible symptoms lies an emotional landscape that can be every bit as life-changing. As I sat stiffly stranded on the couch, creating what I jokingly imagined would become a permanent Shamsa-shaped indentation, I felt my sense of self slowly evaporating.

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What came first?

The people around me could see that I was struggling emotionally. I often overheard the word “depression” quietly muttered about me. Looking back, I don’t think anyone really knew how to help me. I certainly didn’t know how to help myself.

What made that period even more confusing was that not everyone understood the relationship between my physical disability and my emotional distress. Some questioned whether my physical symptoms really explained how low my mood had become. Others wondered if depression itself might somehow explain what was happening to my body.

To me, the sequence of events had always been clear. Parkinson’s disease came first. Yet knowing something intellectually and believing it are not always the same thing.

I had been swept away by a tidal wave of loss and found myself frightened, vulnerable, and desperately unsure of myself. My confidence had been corroded. I felt betrayed by my own body and became terrified that my mind would fail me, too. Gradually, the questions I had heard around me became questions I asked myself. Had I somehow brought about my own disabled downfall? Was I imagining the physical symptoms that left me painfully paralyzed? If I could somehow overcome the depression, would my body recover, too?

I was no longer just fighting Parkinson’s. I was fighting myself.

The right words, on the right day

Being misunderstood by those around me at such a critically vulnerable point in my life left lasting scars. When your experience is questioned often enough, it becomes frighteningly easy to start doubting what you know.

But one truth refused to disappear: I knew my diagnosis had come before the depression. I had to hold on steadfastly to this.

A major turning point came about three months after that life-changing appointment, when I attended a short stint of counseling. I remember shuffling into the first session, emotionally exhausted and deeply confused. As I slowly and candidly described everything that had happened over the previous year, the counselor listened quietly, then she said something I have never forgotten. It pierced through all the mental noise and confusion and resonated with me on a visceral level.

“You are going through the grief cycle.”

Looking back, I recognize that moment as a genuine turning point. The click in my consciousness was almost audible. With one simple sentence, everything finally made sense. I was having a normal, textbook response to what I was experiencing.

I had assumed my emotional collapse meant there was something fundamentally wrong with me. Instead, I was reassured by learning that my emotions were a completely acceptable response to the devastating losses I had been forced to experience. I was not emotionally weak after all. I was not imagining my physical symptoms. I was grieving.

Until that moment, I had treated my emotions as another symptom to conquer. Instead, I learned they were evidence that I was mourning the life I thought I was going to have. There is a profound difference between believing you are emotionally falling apart and recognizing that you are grieving your future. That realization lifted an enormous burden from my shoulders.

The reassurance I received from that single conversation changed everything. It gave me permission to stop battling my emotions and start grieving the life Parkinson’s had taken from me. This was powerful because it changed the trajectory I was on by reframing my experience in a way I understood.

Words are powerful beyond belief. The right words, on the right day, from the right person can have a monumental impact on your life.

Note: Parkinson’s News Today 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 another 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 Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.