My emotional struggle with ataxia: part one – Ataxia

My emotional struggle with ataxia: part one

My emotional struggle with ataxia: part one

I know that I am very lucky to still work, drive and only have to use a crutch as a walking aid outside the house. However, most days I find the mental health side of having ataxia to be harder than the physical side. Before I experienced ataxic symptoms I enjoyed an active social life and went out with friends several times a month and holidays every year; I think I had a strong sense of who I was.

Seeing things not so clearly

Logically, I can see that due to the physical changes of how I live my life, my sense of self has changed entirely. Emotionally I find it hard to declare a concrete image of myself. I tend to think that most people’s reactions to my condition are negative and that they see me as less of a person. I often have to remind myself that this is my own bias towards myself and that most times it’s my own mind working against me. I find it extremely exhausting that I have to constantly reaffirm my sense of self and having to think if my reaction is proportionate or if I am overreacting.

Trying to explain how I feel is very difficult. I think it’s a mixture of sadness, anger, frustration, worthlessness and guilt. But I have good days where I feel strength, determination, gratitude for where I am and happiness. Sometimes I feel numb and the best way I can explain this is I don’t care if I’m alive. I am not, in any way, suicidal, I just feel numb. This may shock some people but I feel it’s important to be honest. I am not sure that’s normal, whatever normal is, but this is my internal struggle.

I know that I worry too much about what other people think of me, I want to look strong which results in me putting an immense amount of pressure on myself to be perfect.  I was annoyed recently after talking to a friend I trust, she said to me: “How you’ve explained things, you have not been treated right, regardless of having a disability or not.” That made me stop and think, do I focus on being disabled too much instead of seeing the behaviour for what it is?

I can also feel left out of situations in my work and private life. I automatically think it’s because of my ataxia, then this leads to feelings of being unworthy and no good. This tends to happen often, although the reality is that if I wanted to join they would be happy for me to do so. Another scenario is that I leave myself out because I convince myself I’m not wanted, which often ends up making the situation a self-fulfilling prophecy. I often feel people let me down, but I do also think I let myself down.

Being honest with myself

During the Covid-19 outbreak I have been working from home, but I like to be in the thick of things (I work for the NHS) and I feel guilty that I could be doing more. This, as well as my internal emotional struggle, is a daily battle.

2020 is going to be a very hard year for everyone surviving and coming out the other side of Covid-19. I need to have things to look forward to because it helps me see a future. I have lots of family events to look forward to. I have moved into a new house that’s more accessible to my needs and doesn’t feel like a weight around my neck. I don’t find partying fun anymore (even though I did), it feels too stressful and it takes the enjoyment out of it. However, I have a fantastic group of friends that still include me and see me very much part of the group.

Finding a way to release

I have a long way to go on my emotional journey and I am realising that I am probably never going to reach the end, but that’s OK. Happiness doesn’t come from external things or people, it comes from physical and emotional acceptance and doing what makes you happy, not others. I am a work in progress and I have found writing this article has helped me to understand better my internal struggle. I am starting to feel less numb which has to be a good thing, right?


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