As I move through my 6th year of chronic illness and disability, I have come into contact with, and been affected by so many professionals and organisations who have tried to help me cope, and maintain a healthy mindset to be able to live my life in the best way I can, I figured a few things out.
It has stunned and saddened me that even the most publicised mental health support organisations in place in the UK seem to have missed the point of how to help others manage the changes that come with becoming disabled and/or suffering long term illness, when previously the patient has lived a relatively normal healthy life.
I am reminded often in my personal life, and when supporting others, that the feelings which seem most difficult to manage, are the ones of loss, possibly because they are so out of our own control. Like losing a loved one, the grief process is actually very similar for any loss. Why do we expect others and ourselves to be able to move past something so life changing that our days will never, ever be the same again? Why would we ask our emotional, loving selves to just ‘get on with it?’ or worse just ‘get over it?’.
The reason I couldn’t let go of my old life, the reason so many just cannot accept their life now with illness and disability is because we don’t want to! I loved my life before illness, I loved the person in me that I spent so much time getting to know, the things I enjoyed doing and the future I felt I had in front of me. When I became ill, I spent a lot of time with therapists and crisis teams trying to get control of my ever spiralling depression and grief, and no matter what I did, I couldn’t embrace this new journey until I made the life changing decision not to.
I decided to carry on living and embracing the life I already had.
'Somewhere in society we became afraid of discomfort, loss, death, illness, and the only way to manage this discomfort was to run from it, hide from it, keep it a secret.'
I accept that many things have changed for me, my future does not look the same to me any longer, but like all things that are alive I am constantly changing and growing, we all are.
I have had many phases in my life and plans haven’t always gone the way I hoped they would, so this situation is no different, this is still my life and my journey exactly as it was before but it has taken an unexpected turn. When I counsel bereaved clients, I used to say to them that they shouldn’t expect to carry on as they were before, because everything has changed, and this seemed to come as quite a shock to so many.
Somewhere in society we became afraid of discomfort, loss, death, illness, and the only way to manage this discomfort was to run from it, hide from it, keep it a secret.
So now it seems our society is having to challenge this idea that it shows weakness to be struggling in life, with mental or physical health rather than highlighting the absolute strength it takes to keep going with such difficulties, and that every single human is struggling with something in life and within themselves. An age of Instagram and Facebook profiles showing images of perfect happy lives only adds the idea that to struggle is abnormal.
Thankfully, there are millions of advocates now for mental health awareness, providing a voice for those who feel they cannot speak out.
So in answer to your questions, yes, you will feel sad, you will feel lost, you will feel a million other things on any given day not just because you are going through a difficult time but because you are human, but the more you fight it and tell yourself you shouldn’t feel this way the more the feeling will grow.
You are allowed to grieve, and feel better about things and then grieve again, I know I have felt I was finally out of the grieving stages before crumbling at the idea I was never going to climb a mountain again, and so it began all over again, another loss wrapped in a million other losses and right in the middle of all this, was the same person inside me I felt was gone.
I am not gone, I am here, just in a different phase that I never expected or wanted to be in, but me all the same. Suddenly I felt in control and huge compassion for my self-having to go through so much, and I wanted to be kinder, and stop kicking myself adding to the negativity I was already experiencing.
I want to be happy, even with the illness and disability, and all the things I can no longer do, I found my fight again! I learnt to remember that this is still my journey and I did not have to let go of anything because it was all still a part of me, just…different now. I reclaimed myself!
So my advice for me, for you, to all mental health professionals and organisations, support yourself and others to let it be, sit with it, be sad, be angry, be happy, but also know we are still here, the same people with a new issue, new growth and learning under our belts, and together we can find a way through like we always did before.
Lisa Taylor is an online and telephone counsellor with years of experience within various supporting roles for children and adults, a mother of three and very much a homebody, and since 2011 a Chronic illness and disability warrior. In her own words "I fight for the emotional and physical rights of myself and others and try to live my best life, hopefully enabling others to live theirs."
For all enquiries visit Lisa Taylors Website or connect via Facebook