Living with a chronic long-term health condition, can have a devastating effect on someone’s life as it affects everything we do. It’s like finding yourself on a new path without a map. You are learning to navigate the future with your head stuck in the past. At least that’s what it felt like to me.
As I mentioned previously in an article on social phobia, I was diagnosed at the end of 2015 with Benign Essential Blepharospasm. This is a neurological movement disorder which causes my eyes to blink uncontrollably and affects my ability to see. My eye muscles contract constantly resulting in painful spasms and enforced eye closure. The spasms can be so severe as they tend to build in intensity throughout the day to the point where I can’t keep them open. I receive regular Botox injections to paralyse the muscles which gives me some relief.
In this article I am trying to raise awareness of the challenges we face as we try to rebuild our broken lives. When you lose your job through illness, it feels like you lose a part of yourself. For a long time, I felt like a spare part in my job especially towards the end as I could not function the way I used to. Carrying out daily tasks, working with children, trying to keep my eyes on them all, using scissors to cut out artwork when I couldn’t cut straight, was tricky. I couldn’t see what I was doing.
When you feel so broken inside, it is as though you are fighting yourself all the time. Part of me was like a wounded child, crying inside in despair whilst the other part of me was telling myself to get a grip, get over it, move on. I wanted to get my life back on track but I just felt helpless and hopeless at times. I believe it is part of the grieving process we go through as we are effectively letting go of who we used to be, whilst trying to embrace a new kind of reality we are not familiar with.
During my struggle from denial to acceptance, I discovered faith, hope and trust. It may not be the same for everyone, but on reflection to the point where I am in my journey now this is what I’ve come to realise. faith is a part of me that knows everything will work out in the end. The hope is wanting everything to work out for the best and the trust is expecting everything will work out. I’ve also looked at the positive changes in my life that have stemmed from living with blepharospasm. These are the things that have made me stronger and more positive.
- Adapting to Change. It is difficult for me to look at a screen for any length of time which is a problem when you enjoy writing so much. I have been learning to read and write braille so that when my eyes are tired, I can just let them close and read with my fingers. I’m also writing this article using speech to text so that I don’t have to look at the screen too much.
- Embracing my other senses. I’ve learnt to appreciate listening to the radio, music and podcasts instead of looking at a television screen. I like to feel the gentle breeze when I walk outdoors listening to the sound of the birds singing in the trees as I cannot always see the world around me.
- Empathy for others. I have become more aware of the needs of others because I understand how they are feeling inside.
- Nothing to lose. Writing these articles has helped me to develop my attitude of I have nothing to lose. You begin to look at life in a different way.
- Trying new things. I’m more open now to trying new things, joining new groups because it feels like the right thing to do. Even though I have become more introverted and fearful of social gatherings, by trying new hobbies and interests I’m beginning to find things I can do, which is increasing my confidence. Okay so I’m not the best artist but joining the art group makes me feel alive inside. There are volunteers who help us to achieve the results we are hoping for. I see myself as a work in progress.
Trying something new might mean trying a new holistic therapy or treatment; having a new hairstyle or trying a new diet but it is by doing something that you haven’t done before that you begin to embrace change. Look at it as a signpost that gives you some sort of direction in life, some sort of starting point. It may just turn out to be a temporary path but it also might lead us to something else that we haven’t considered. There may be opportunities for us to learn and grow into the person we want to be instead of feeling trapped by our circumstances.
It took me quite a while to get to the point that I’m at right now. It’s been a process of letting go and embracing a new version of myself. There have been times that perhaps I have sabotaged myself, preventing myself from moving on. Why did I do that? I don’t proclaim to be an expert on the psychology behind the feelings and I’m purely writing from my own personal journey of living with blepharospasm but these are the reasons I think we put obstacles in our path.
- Unconscious decision. I think when you are dealing with pain all day, every day, it takes over your life to the point where you don’t realise what you are doing to yourself. When you hurt on the inside, it reflects who you become on the outside and certainly from my journey, I was being negative without consciously realizing it.
- Trapped in our comfort zone. There is a tendency to keep on telling ourselves, I’ll wait till I feel better. I’ll do it tomorrow, So, we put off doing what we could be doing and as time goes by, we end up stuck in our comfort zone where we feel safe. The trouble is with chronic illness there is no day when we are going to feel better. We have to learn to embrace the day with pain, feeling lousy, tired and irritable and still make today count.
- Judgement by others. We are afraid of what people think about us or what they say about us. We want to be accepted exactly as we are but because we have changed, we feel judged and if we feel bad about ourselves, we are expecting others to be disappointed with us as well.
- Making mistakes. When you have difficulty in functioning as you normally would, you are more prone to accidents and making mistakes. This is not good for your self-esteem so we retreat into ourselves.
- Being unable to cope on bad days. It is difficult to show up to work, or activities if we are feeling so ill and not all employers are sympathetic because they have a business to run. All employers have a duty of care towards their staff and have to make reasonable adjustments in the workplace these days. My worry was what do I do if I really can’t cope on a bad day and need to go home? I suppose I was afraid of failure. I was afraid of ending back at the point of being made redundant, and going through all the emotions I’ve been through, again.
In the past I’ve looked towards others for support and advice to move on with my life, now I’m beginning to realise the answers lie within ourselves, we have to ask the question what’s stopping you? as we try to find a way around the obstacles that are in our way to live a more fulfilling and enriched life exactly as we are now. We all have our inner strength waiting to be unleashed.
We can’t go back to the way we used to be and I hope that by sharing this article, prospective employers will be more aware of employees living with chronic health conditions, finding more effective ways of supporting them in the workplace. I also hope that people working in employment agencies will have a better insight into the thoughts and feelings of anybody living with incurable illnesses when they are trying to help them find suitable employment.
About the Author: Claire Rider was diagnosed with benign essential blepharospasm in 2015 and had give up driving and her job because she couldn’t do the tasks she used to be able to do. She can look down and use screen readers and speech to text to help her write. She spends short periods of time on the computer because it seems to trigger her eye spasms. She is looking to work again and would love a job where she can help others. She used to work as a Special Needs Teaching Assistant.
