The loss of my twin, my identity, my health and tinnitus 

Four years in and there are two versions of me.

I call them Ilana 1 and Ilana 2.

Ilana 1 was the woman I was when my twin was alive. She was healthier, didn't live with tinnitus and had never imagined a life without her twin. We had always been together, and the thought of one of us living without the other was something I had never really considered.

Then my twin died.

And with her death, something in me changed permanently. It was a challenging time.

A part of me closed off. Not physically, but emotionally. The person I had always been could not continue unchanged after losing someone who had always been part of my life.

I was no longer the same person, and I didn't yet understand just how much my life was about to change.

Six months of stress and two months after my twin died, I began hearing a constant whooshing sound in my ear. It was the beginning of my tinnitus.

The timing has always stayed with me.

I can say with confidence tinnitus became part of the events that led to the loss. In the months leading to my twin's death I experienced the greatest emotional shock of my life, and in the months that followed, I found myself struggling with her emotional separation.

I had lost my twin, but I also felt I had lost something of the sense of normality. Her loss changed my emotional world, but I was also having to adjust to changes in my physical world.

It was difficult to comprehend just how one life event could leave me feeling so different in many ways.

Now there is Ilana 2.

Ilana 2 is learning to live with tinnitus every day. She is also learning to live in a world where her twin is no longer physically around.

She carries experiences that Ilana 1 never knew. She understands a kind of loss she never expected to experience, and she has had to adjust to a life that looks very different from the one she once imagined.

People often say that grief changes you.

I don't think grief simply changed me. I think it ended one version of me and began another.

That doesn't mean I have forgotten Ilana 1. She will always be part of me. She belongs to the years when my twin was alive, when she felt whole.

I still recognise her. I remember the woman who was living her life, writing, making plans and looking ahead to a future she had every reason to believe would include her twin.

Ilana 2 carries all of that, but she also carries the loss.

She carries the memories, the grief, the tinnitus and the experience of having to find a way forward without someone who had always been there.

One of the hardest things about losing a twinset is you don't just lose the person. You also lose the life, good and bad, of the life you thought you would continue to share with them.

Ilana 1 didn't actively choose to become Ilana 2. She had no choices about that.

If Ilana had been given a choice, she would have stayed as Ilana 1. She would have chosen the life she knew, the health she had and a future in which her twin was still part of her life.

Ilana 1 was simply living her life. She didn't know what was coming, and she had no reason to imagine that everything she understood about her world would change.

Ilana 2 has had to learn to live with grief, adjust to tinnitus and accept that the life she once knew cannot be returned to.

I don't see these as two completely separate people. They are both me, and the person I am today is shaped by everything that came before.

But there is a difference between who I was and who I have had to become.

Losing my twin changed my identity, my health and my understanding of life. It changed things I never expected to have to think about, and it left me with a version of myself I was never able to prepare for.

Perhaps the hardest part of losing my twin has been discovering that I have had to redefine myself without ever wanting to. I didn't set out to become a different person. I didn't want a new identity or a different version of my life. But the person I was before her death cannot be separated from the person I have become since. I am still me, but my understanding of who I am has changed.

Ilana 1 will always be part of my story.

But Ilana 2 is the person living it now.

Ilana Estelle is a mental health and wellbeing advocate who combines educational insight with her personal experience of living with physical, mental, and emotional disabilities. She holds diplomas in Counselling, Diet and Nutrition, Nutritional Therapy, Psychotherapy and Counselling, and Stress Management. Through her writing, Ilana supports others in navigating their emotional, mental, and physical health challenges. In addition to writing for The CP Diary, her work has appeared in healthy lifestyle magazines. Ilana is also the author of three books: Cerebral Palsy: A Story – Finding the Calm After the Storm, Spirituality, Healing and Me, and Survival: The Covid Years – Time for Change.

Most people who read this blog

went on to read these blogs next
Date 31 October 2026
Author Ilana Estelle

Being Understood: Growing Up with a Disability

Childhood Experiences and Their Lasting Impact A child's experience of growing up is shaped by more than the care they receive. It is also shaped by how well the people around them understand their needs, recognise their ...
Read more
Date 29 October 2026
Author Ilana Estelle

Autism and the Hidden Challenges of Living Independently

When the familiar world changes, leaving you to navigate life and the overwhelm of autism on your own Thank goodness for this blog – a place to make sense of my experiences. It's been a challenging life. Growing up ...
Read more
Date 26 October 2026
Author Ilana Estelle

Healing Earth Side: Putting Mental Health First

Learning to Live Well With What I Cannot Change. I have come to understand that healing is not always about fixing what is wrong. As my experience shows, some things are beyond our control, and therefore healing ...
Read more
1 2 3 … 692

Leave a Reply

Your email address will not be published. Required fields are marked *

Subscribe to receive regular updates

Enter your details below to be the first to receive updates on new articles on my blog.