Consumer and the Carer, The Tension

Im writing this in the third party, part of my often conflicted views.

I take umbrage sometimes with the emerging commercialisation of lived experience. This might be hard for some of you to read, but i am NOT a career or an industry. I am a person who has lived experience of extreme trauma, yes, viewing it is tough, living it is a nightmare.

Richard

Richard sat on the edge of his bed in the sterile, white room of the mental health ward. The hum of fluorescent lights overhead was a constant reminder of his isolation. Despite the friendly smiles of the carers and the genuine concern in their eyes, he felt an insurmountable distance between their understanding and his pain. They could relate to his experiences, but they had not lived them. They had not felt the deep, gnawing despair that clawed at his very soul.

Each day was a struggle against the heavy weight of depression that pressed down on him, making every movement, every thought, an effort. The carers tried their best, offering words of comfort and activities to distract him, but Richard knew that their experiences were only shadows of his reality. They had not screamed at their mothers in a fit of agony, causing pain that they could never take back. They had not felt the shame and guilt that followed, the crushing sense of being a burden, an unwanted presence.

The lived experience movement aimed to bridge this gap, to bring together those who had walked the path of mental illness with those who cared for them. But Richard often wondered if this goal was truly achievable. Could anyone ever fully understand the depth of his loneliness, the darkness that enveloped him, without having been there themselves?

As he pondered this, a new question began to take shape in his mind. Who are the leaders? he wondered. Who drives change, who gives the testimony of our experiences, who is listened to? In the cacophony of voices speaking about mental health, whose stories made a difference? Richard knew that real change needed champions—those who had felt the raw edges of despair and could articulate it in a way that resonated deeply with others.

Despite his doubts, Richard clung to hope. He believed that one day, there would be a true understanding between those with lived experience and those who cared for them by proxy. He envisioned a world where the pain of depression was met not just with sympathy, but with true empathy, where the screams of anguish were met with a knowing nod, a shared tear.

Richard's hope was a fragile flame, flickering in the harsh winds of his reality. He held onto it tightly, believing that one day, the lived experience movement would embrace this conflict and emerge stronger, more unified. He dreamed of leaders who had walked the darkest paths and emerged into the light, guiding others with their stories and strength.

Until then, he continued to fight his own battles, holding onto the belief that his pain was not in vain, that his story would one day help others understand the true depths of mental illness. As he sat in his room, he whispered to himself, "I live in hope we will." And with that, he allowed himself a moment of peace, a brief respite from the storm raging within him.

In love and reflection

R and H