Here is a post I wrote back in June 2015 but didn’t feel able to publish – now I do. It’s strange reading it how relevant it still seems, though a little less raw now as I’m becoming more adjusted to this new ‘normal’

NB this is not a post for pity or sympathy, it’s simply a post to put in to words some of my complicated experiences of grief relating to having a significant and longterm (chronic) illness – I hope it will help build understanding and put things into words for others who experience similar things but are unable to articulate them at this point in time.

It’s generally accepted that grief – our natural response to the experience of loss – has 5 stages:

Denial – numb, acting as if everything is ok, in survival mode, isolation

Anger – against other people, yourself, God, the situation in general, people responsible, the unfairness of it all – at the root of the anger/frustration is pain

Bargaining – Asking questions, trying to understand why, attempts to regain control, e.g. ‘if only…’ or ‘what if…’

Depression – sadness, regret, worry, guilt, wondering ‘What’s the point?’

Acceptance – learning how to be at peace with the situation, accepting reality for what it is, recognising what has actually happened and learning how to live with it

They say that grief is not a linear process – it’s not like you go from one stage to the other in a neat order and when you get to the end someone pats you on the back and says “Congratulations, you have successfully grieved, here’s a certificate”.

In reality people might go from one stage to another and back again many times over, in any order, or stay in one stage for a long time or even experience several at once.

Any kind of grief is incredibly complex and every person will experience it differently – there’s no ‘right’ or ‘wrong’ way to grieve.

The stages aren’t meant as milestones you have to pass in order to get to the next level, they’re there to reassure people who are dealing with any kind of loss that the thoughts and feelings they’re experiencing are completely normal.

Having said that, I’m starting to wonder if grief associated with chronic (longterm) illness might have its own ‘normal’, partly because there are so many layers to the loss – every single part of your life has been ripped apart by your illness – and partly because it’s ongoing, so there’s no point of closure.

Some of the things affected by my experience of chronic (continuous and longterm) migraine include:

Lifestyle – my condition has significantly affected my job, my social life, my hobbies, my leisure activities, my finances, my holidays, my experiences of community and connection and what I’m able to do on a day-to-day basis.

Relationships – through nobody’s fault, my relationships with people have naturally changed since the unwelcome visitor of chronic illness was thrown into the mix, from being limited to when and how I do things to the awkwardness that it brings when neither of us knows what to say or do any more. And the guilt, however much people tell me not to, the guilt that other people are having to look after me, the guilt that other people are doing the things that I am meant to be doing and want to be doing, the guilt when I have to change plans, the guilt that I can’t be the wife, friend, daughter, colleague, that I want to be.

Identity – my experiences have shaken my identity to the core, challenging every aspect of who and what I am and why I’m here. They’ve made me ask questions I never wanted to ask and didn’t like the answers to, mainly because there are no answers. I’ve lost all my foundations and assumptions about life, myself and everything – I deeply miss the relative simplicity and certainty I used to have.

I’ve lost freedom, independence and opportunity,I’ve lost choice and control, I’ve lost all sense of safety and security, I’ve lost my identity and my purpose.

All of these things represent a loss, so I’m grieving for each of them in some way or another – usually in some crazy, confused and jumbled up way that makes sense to no one, least of all me!

On top of all of that I’m having to let go of my hopes and dreams for the future and grieve each one in turn. I’m even grieving for the innocence with which I dreamed those dreams and just assumed that life would turn out ok.

I’m also grieving the times when I could take my health for granted, when I never even realised what a wonderful gift it was – before the intense vulnerability that comes from knowing that I can no longer trust in my body and brain to do the things they’re meant to do – they’ve failed me and even if they get fixed this time around, that basic trust I once had has gone.

I’m grieving because now I know that my body is weak, my brain is faulty and because I’ve seen where my mind can take me on bad days.

I’m grieving for all the days I’ve lost so far, for birthdays, weddings, meals, dinner parties, gatherings, lunches, coffees and all the passing conversations that I’ve missed and for the loneliness that comes from being ill.

And I’m grieving for the days that stretch ahead, all the days to come that will continue to be an uphill struggle because that’s just the nature of the beast.

I’m grieving for all the time and energy spent on fighting battles no-one will ever see, and for all the things I wish I could have been doing instead.

I’m grieving the fact that I’m not one of the fortunate few who discovers their miracle cure, all the prayers for healing have not been answered, there’s no fairytale happy ending, just the dawning realisation that we’re in it for the long haul.

And I’m grieving for all the time I lost while holding on and longing so desperately for the life I wished I had, which meant that I couldn’t live the life I actually had.

I’m also mourning the realisation that there’s no going back – even if I was totally cured tomorrow I couldn’t go back to where I was because the world and it’s people have moved on since I’ve been gone. And even if they hadn’t, my experiences have rocked me so completely that I’m now a fundamentally different person.

I’m faced with the task of carving out a new place in a world that is both familiar and alien, with a body and brain that don’t work properly any more, in circumstances that I don’t want but can’t change, and I have to somehow wade through all these layers to come to some kind of place where I can move on.

But the grief will still be there as a companion on the journey. It never fully goes away, you just get more used to dealing with it and the pain begins to hurt less often. Grief has no time-limits and no ‘right’ or ‘wrong’ ways of working through it – grief will do what grief will do.

Given how many things are lost when longterm invisible illness takes hold, I think grief is probably quite an appropriate response. Maybe I shouldn’t be surprised when I feel a bit overwhelmed sometimes.

Everything has changed, but all is not lost.