Grieving when you haven’t lost someone is known as anticipatory grief. It was part of me growing up with something I didn't know I had until I was in my forties, finding out I had cerebral palsy, then finding out in my fifties I also had autism. Imagine growing up with all of that and not know you're dealing with it.

My life was never been centred around my disability and still isn't. Having to live a normal life, (or as normal as I could), I lived and continued to live a lie. Anticipatory grief followed me into my teenage years; it's still with me today.

How 'Anticipatory Grief' manifests

Anticipatory grief manifests itself in all sorts of situations; a major life change, something you deal with that you don't know about that you later come to learn about; a disability that changes the way you are able to live your life, the loss of a job; or losing a loved one.

Grief is how I would sum up how I felt.  The feelings were so intense, each day I continued to feel like I’d experienced a death. Just getting through each day was a challenge. Every day I was mindful of those intensities and still I carried the stress. Anticipatory grief is just as challenging and intense as losing a loved one.

Those feelings don't go away

With no explanations, clarifications, acceptance or closure, around what I later learned was a disability, those feelings never went away. Every day was an anticipatory grief day. And even though I know what I have and have worked things out for myself, I've never been able to talk about or have a discussion with my family about my disability.

Emotions around Anticipatory Grief

The emotions you get to deal with can include anger, fear, sadness and anxiety. As a child, I was angry, I carried fear and dealt with anxiety. From all that, I'm lucky I didn't have physical symptoms; symptoms which include fatigue, insomnia and changes to your appetite. It’s not always easy to know you’re dealing with anticipatory grief, but it is made all the more harder, because you’re expected to just get on and deal with daily life and responsibilities.

Anticipatory grief can be a profound and an ongoing challenge, affecting various aspects of your life and emotions. It can resurface unexpectedly and at any time. Being kind to yourself is important if you are grappling with anticipatory grief, or any form of loss.

It's something that you continually have to deal with

Anticipatory grief is something that you will continually have to deal with. Is it something you ever get over? With clarity and explanations you can find an acceptance, but otherwise I would say no. Even with a 13+ website behind me where I talk about my experiences, I still don't feel any better. However you get to deal with anticipatory grief, remember to practice self-care, get enough rest, eat well and engage in activities that bring comfort and relaxation to help you cope with how you feel.

There isn't always a definitive end

It is important to acknowledge anticipatory grief and to know it's a process that may not have a definitive end. That's what makes it challenging. It can also resurface at any time and can continue to trigger intense emotions. That is certainly true for me. The disability triggered my emotions and the not knowing made my stress worse.

My own advice: practice self-care, get enough rest, eat well and engage in activities that bring you hope, comfort and relaxation. If it's not something you're personally responsible for, it isn't something you need to own.

Be kind to yourself is important if you're grappling with anticipatory grief, or any form of loss.