Living with Blepharospasm, Coping with Social Phobia

I was diagnosed with benign essential blepharospasm at the end of 2015. This is a neurological condition which causes the muscles around my eyes to contract, resulting in uncontrollable blinking and eye closures which affects my ability to see.

I am adapting and coming to terms with the way I am now. This is my journey and one of the things I have encountered and I’m still trying to overcome is social phobia. I am sure many people with different kinds of conditions will be able to identify with these feelings. It is still raw to me as I write.

I am still learning to adapt as I try to make sense of it all so this article comes from the heart and my experience of how a long-term condition can make you feel on the inside. I have come to realise that it is all part of the process we go through.

What makes someone feel different? After all, we are all unique. We were never meant to be the same and although we are an inclusive society, there seems to be a general unwritten consensus of attitude that requires a degree of conformity.

This sense of whether we fit in or not can be perceived by ourselves or it can be real. Different groups of people can affect the way you feel and behave. We naturally gravitate towards people who are like us. People we share the same morals and values with for example; people who think the way we do; people who share the same hobbies and interests. The people we surround ourselves with help us to establish our own identity. There is a common bond that connects us to others. When you are experiencing a life changing illness, trauma, disability or any other situation which affects your ability to connect in the same way, you experience a feeling of being different.

From my own experience it was the constant blinking and twitching of my eye muscles that led to me feeling different. Feeling awkward in the company of others. It is like a metaphorical veil has fallen over me, establishing its presence as a gap between myself and others. It is as though a part of me is missing. Even though society has become more inclusive for people with disabilities, it doesn’t stop me from fearing a judgement by others. A feeling of alienation sweeps over me because I feel different now.

So, does society stigmatise us, or are we doing it to ourselves? Sometimes I’ve been able to sense an awkwardness of people around me in a social gathering because of the way I look. I wear dark glasses all the time now to keep out the light as it triggers my eye spasms. I am not blind but to people who don’t know me, I look blind.

I can sense that they want to help me but don’t often know what to say. I may be feeling awkward, just as they are feeling embarrassed if I refuse their help. I use a long white cane when I am out by myself to let people know I may not be able to see them as I do tend to bump into things a lot when my eyes spasm and shut. I do have vision but not all the time and I try to stay as independent as possible.

I appreciate people offering to help me crossing roads or helping me to navigate my way around a shop as it can be difficult sometimes. At other times I can see reasonably well and then I feel bad for being me. It’s as though I expect others to judge me as one minute I am using my cane and the next I am trying to do some shopping. That’s the way it is. When people don’t walk in your shoes, it is hard for them to understand what your daily life is like. It is the continuous blinking and eye closures that make it difficult for me to see properly but the psychological impact of this debilitating disease has taken its toll on my mental health.

I have begun to realise that my fear of judgement by others has become so bad it has led to social phobia. It didn’t happen overnight. I didn’t suddenly wake up one day and not want to go out. It has been a series of things that have triggered this. My basic feelings were doubt, wondering will I fit in? Will I be accepted as I am? and despair. I can’t go because I’m not like them anymore. Of course, the overriding fear I was experiencing, was what do people think of me? The reality was they probably didn’t think anything of me because they’re too busy getting on with their own lives, worrying about their own problems.

The factors that caused me to feel this way stemmed from casual comments such as are you winking at me? Why do you screw your eyes up like that? Why are you wearing sunglasses indoors? These comments were made before my diagnosis but obviously took root inside of me. No one was being cruel. People just said what they saw. The diagnosis came much later following a minor car accident.

I felt ashamed of myself for having the tics.

I felt afraid of not being believed.

I felt guilty for having a body that I couldn’t control.

I felt afraid of being ignored and laughed at.

I started to withdraw from family gatherings and events after losing my job. I lost my job because I couldn’t do the things I once could. In the latter months of my job I felt like a spare part. This led to me losing my confidence as well as a loss of sense of purpose. No one was to blame it was simply the way it was.

I don’t proclaim to be an expert on overcoming social phobia as I am still learning new ways of coping with this part of my disease. As well as the feelings of guilt, shame, and anxiety that sweeps over you whenever you leave the house, there are also physical symptoms such as:

Dry mouth.

Rapid heartbeat.

Dizziness.

Headaches.

Lightheadedness.

Feeling sick.

Feeling faint.

At times it was a wonder I ever managed to leave the house but I did because I knew I had to, however ill it made me feel.

Even today I still feel like this but I join groups where I know I will fit in and be accepted. I go to an art group for people with visual impairment and I enjoy connecting with other people who also have sight loss. I feel happy and comfortable there. I choose to be around people I know well when I socialise. Recently I went to a concert and some of my friends knew I had the health condition. They rallied round and found many more of my old friends who I would never have seen if they hadn’t got them to come and talk to me during the interval. It was such an amazing night out and I felt the love and support.

I experience good and bad days whenever I go shopping but I can’t let the bad days put me off doing day-to-day tasks. Sometimes we just have to find the courage within ourselves to overcome obstacles to live our best life. I am doing some voluntary work being a point of contact for people with visual impairment. This has given me back my sense of purpose and I hope to find paid work again one day. It is easy to say I should put my fears behind me and carry on. It isn’t always easy to do.

 It takes self- belief and courage to move from the place you are at now to where you want to be. There will always be challenges ahead but I feel more prepared for them now than I was.

 

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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