Coming Through the Darkness: a Blepharospasm Story

Talking about mental illness is never easy but I wanted to share my experience of it with you. In my case, it came as part of my struggle with Benign Essential Blepharospasm, as well as coping with the constant pain of osteoarthritis in my knee. This is the most personal and most challenging article I have ever written but I hope it will help patients and doctors to fully understand the implications of chronic illnesses that may not in themselves be life threatening.

When you suffer a meltdown, it feels as though your spirit is crushed, your body is broken and your mind is all over the place. Part of me was thinking, “pull yourself together.” The other part of me was like a petulant child. I felt hurt inside, but the counselling I received was very helpful, and pulled me through the toughest part of this journey.

I feel that this angle is overlooked. Physical and mental health are entwined.

To begin with my eyes were blinking uncontrollably. My eyes felt heavy and gritty, like sandpaper. It got to the point where I could not keep them open so I was walking  around with them shut. Things became so bad that I could not see to drive my car properly. It was so hard to see the road in front of me. At first, I thought it was some kind of allergy but no matter how many eye drops I tried, my eyes would just squeeze shut. Trying to focus and keeping my eyes open caused me a lot of pain from the constant muscle contractions. At the end of 2015, I was given my diagnosis following a minor car accident on my way to work.

When you have a chronic health condition, it is not just the physical side of it which is so difficult to accept. You see, when a part of your body isn’t working effectively, it has a devastating effect on the rest of your life. My work life was harder than it had ever been. I was really beginning to struggle with daily tasks because everything was such an effort as I couldn’t see properly. I made mistakes and bumped into things constantly which lowered my self -esteem so much that I felt very awkward at work as well as in social situations. I felt very clumsy. I tried to carry on as best as I could without telling anyone. I just did what most of us do. I put on my smile pretending everything was ok, only a few people were aware of how much I was struggling. My knee pain was pulling me down as much as the constant eye muscle contractions.

My home life was not much better as I tried to carry on preparing meals, running the home being there for my husband and daughters. I burnt my arm on the iron because my eyes went into a spasm and I thought I had put it back in its cradle but I hadn’t. I put food away in the wrong places, which my family found so irritating. Without meaning to demonise my family, who have been my rocks during this most challenging time of my life, I began to find home life as stressful as my working life was. It was nobody’s fault. I was trying to function as best as I could and felt I was failing miserably.

Shopping trips were never easy because I kept on bumping into people and trolleys at the supermarkets or I would wander off to find something and not be able to see where I was going which caused panic for my husband when he couldn’t find me. It was much easier for me to stay behind, letting my husband and daughter take over the shopping. It was very frustrating for all of us. My confidence plummeted but I continued to go through the motions of daily life until that day when everything came to a head.

It was a Sunday morning. I hadn’t slept particularly well the night before. I was feeling up and down a lot of the time barely coping with my situation. Guilt crept over me because I wasn’t being the mother I wanted to be. I kept dropping things, spilling things, bumping into things and without thinking about what I was saying, I blurted out that I did not want to be here anymore. To be honest with you, it shocked me as much as it shocked my family. I had reached my lowest point and I felt I could not go on but I hadn’t meant to say those words. My husband was very worried about me. I was crying a lot and he was trying to console me but I kept pushing him away. I needed space. I was in such a state of confusion and fear.

No one seemed to be able to calm me down. I just cried and cried. I felt like a burden.  I felt pathetically weak and ashamed of myself. It was almost as though I had failed one of life’s greatest challenges. For anyone reading this who has been through this experience, I am sure you will be able to identify with the battle within yourself. The rational side of your brain tries to make you see reason but there’s the part of you that is hurting so much, that you cannot surrender enough to be able to control your emotions easily. The mental pain is strong and you are unable to think straight, if you can think at all. You are actually fighting yourself.

The following day, my husband took me to see the GP. I thought to myself, “This is where they put me in a straight jacket and stick me in a mental hospital.” I really believed I had lost the plot, so, it was a surprise to find it wasn’t like that at all. The GP was lovely. She was so calm, so patient and she gave me two options. I could try antidepressants or counselling. I was relieved that I wasn’t about to be locked up somewhere far away.

Counselling helped me to come to terms with my situation. Until this happened to me, I was never one for talking about my feelings. I preferred to dismiss my troubles instead of facing them. Counselling helped me to open up at the time when I was feeling guilty for letting my family down and ashamed of myself for crashing like this. I missed the person I used to be; however, this experience has made me more empathetic towards others. You really can’t appreciate how someone feels inside unless you’ve been through the darkness, as I call it because that’s exactly what it feels like. You can’t visualise a bright future for yourself. You can’t think beyond the moment you are in. It feels as though you are trapped in a pit from which there is no way out.

We can all make judgments, we can all think there is someone worse off, we can all think it’ll never happen to us and when it does, we stop thinking as we begin to feel. We should all talk more about how we’re feeling inside instead of trying to be brave all the time or trying to block it out.

I hope this article will make everyone stop and think when you ask someone if they are ok, they may not be. If you are feeling low please take comfort that you can and will get better with the right support. You will get through the dark days. You are strong and courageous. It just takes a bit of recognition that you are suffering and you need time to work through your feelings which seem to become jumbled up inside that’s all. There’s no shame in asking for the help you need. Don’t keep yourself locked inside. Talk to someone. It doesn’t have to be the end. Think of it as a solution to a problem that will help to set you free, as opposed to a negative assumption that we should be able to cope and conduct our lives through all our trials with integrity.

There will always be tough times. Sometimes  a few words and a listening ear is all you need.

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.


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