My biggest fear is change. I live in fear of the unknown, the future, and time passing. I cling to my routines that make my life feel more secure, well managed, and coherent.  Of course, change affects me in different ways depending on how significant the change is to my life, and how much meaning I have invested in  the thing that  has changed. I can cope with some change so long as my general routine is running to plan, and if there is a predictability to the change. So, for example, buses and trains are routinely late. I therefore expect them to be slightly late, and so this does not bother me too much, so long as the lateness does not disturb the plans I have made for that day. However,  if I have an important meeting to attend, or I am delivering a talk (one of my special interests), I will aim to get to the venue very early, just in case the train is late. In these instances the prospect of the train being late causes me huge anxiety, and I cannot relax until I have got to the venue.

As mentioned, I am most traumatised by change when it either affects my interests, or results in me losing something that made me feel secure or gave me pleasure. There is therefore a bittersweet quality to my interests. Although they make me feel good and give my life meaning, there is always the possibility that something will stop me from accessing them or being able to spend time doing what I enjoy. And if this happens, I feel an extreme sense of derailment, as though my life has lost all meaning. I think the reason I feel so sad and disorientated when I can’t access an interest, is because I invest so much energy and passion into one thing. Although I might have other interests, they pale into insignificance compared to the dominant interest that is my guiding light and source of inspiration.

I am also affected by important changes to my routine.  For example, it is very important to me that Sunday follows the same pattern each week. This is because I use Sunday as a day of rest. During the week I might have to socialise and go shopping, activities that are emotionally draining. It  is reassuring and comforting to have a predictable day at the end of the week, so that I can re-set my brain in preparation for the next social and sensory bombardment. My Sunday routine is as follows: I get up around 9am after spending time idly surfing the Internet; I have breakfast at 10am with my parents (which is always tea and a sandwich); then my parents go out and I read for two hours before having cereal for lunch; then I wash up, before going for a 20 minute walk around the local park; back home, I make myself a coco before having a bath after my parents return home at around 6pm; then we have meal, which is always soup and bread in the winter; after meal I will surf the Internet again until 9pm; then I will sit in bed playing on my phone until bedtime at 10:15pm.  Sometimes this routine changes, such as at Christmas. I expect changes around Christmas, and as long as I have been given advance notice about any changes and the reasons for the change , I can just about manage and get through the change. However, if the change is unexpected and I have been given less than a week’s notice, I cannot cope with the change at all. In these situations, I feel extremely confused and disorientated. The outcome is usually uncontrollable screaming and crying. It can take me a while to process change. Initially, I will feel nothing at all, as though I am in a daze, a bit like the calm before a storm. But after a few moments, an extreme surge of energy cascades through my body, a feeling of immense rage and confusion. At this point, I go ballistic, and I cannot control my actions. I lost control in this manner about two months ago, shortly after New Year. Normally my brother does not join my parents and I for breakfast on Sundays. But on this particular Sunday it was announced just before breakfast that my brother would be joining us.  At first I verbally protested by saying ”no he is not, he never eats with us on Sunday”. I did not feel anything much at this point, but instinctively knew that this change to routine was very wrong. After a while I started to shout and scream. Then there was a lull where I felt surprisingly calm. I had locked myself into the toilets, and stood staring at the wall while I rocked back and forth against the sink. I was still processing the change and had no idea what I was feeling, other than that things were not right and I had to get my routine back on track. Then, without any warning, a wave of emotion crashed through me, and I felt extremely enraged. I could not think straight and was screaming and crying as if the world had ended. Although this outburst was over relatively quickly, for the rest of the day I felt shaky and light-headed. I realised afterwards that I had over-reacted, and I  eventually accepted my parent’s explanation that because it was still the holiday period, there would be changes to routine. However, because I had been given no warning that a change would happen, I could not process what was happening fast enough.

As I have grown older I have learnt to control my behaviour when I am out in public. Therefore the outside world will very rarely witness my outbursts. A change might happen and the effects of that change will be suppressed until I get to a safe place. This might give others the impression that I am okay. Sometimes it can even seem to myself as though I am not that bothered by what has happened. It can take several hours or even a day before  I start to feel anything. I really struggle to understand emotions and to identify what I am feeling, and this makes the experience all the more confusing. When the emotion does come, it is intense and violent, but it is also a relief. Being able to cry is healing, and it feels better than being in a limbo land of vague irritation that has no external outlet. It is actually  the flood of negative and obsessive thoughts that besiege my mind in the aftermath of change that are most troublesome, and these thoughts will continue to be a nuisance long after any emotion has dissipated. Moreover, significant change makes my whole life seem meaningless and disordered, and I go into a state of mourning that can last weeks.

I also struggle with unstructured time, where I have to decide what to do. It is very hard to get started on tasks, and to move my mind from one activity or stream of thought to another. Consequently I can spend a lot of time idly procrastinating. It takes a huge amount of energy to change activity, even just to get up from sitting to making breakfast, doing my teeth, or getting dressed. I delay acting for as long as possible because it is more comfortable to stay seated and not do anything. But I cannot escape the infinite tick ticking of time, and the sense that I am wasting time and  not getting much done, causes anxiety.Conversely once I have started an activity, it can be very hard to stop what I am doing, both physically and mentally. This can mean that assignments or tasks that I have to complete can make me feel very stressed, even once I have completed the task. I am a perfectionist and so I constantly worry that the assignment, for example a presentation, has to be improved, and I cannot rest until this is done. It is hard for me to process the day’s events because there is so much information that I have to organise and understand. This means that I often feel overloaded and mentally tired.

The way I see time also affects my perception of change. I visualise time as a concrete entity, stretching out in front of me, in bold colour. Time is a parallel reality, and it is no less real than what I see in front of me.  I  automatically and unconsciously attach important events or facets of my routine onto a day or month in this multi-dimensional landscape. If the routine is broken, the landscape itself feels tarnished, and this adds to my anxiety.

My OCD and anxiety always gets worse prior to important meetings or events, particularly if they make my life feel meaningful. To protect myself, I can become quite reclusive in the days running up to an event, and I limit what I eat in order to avoid possible contamination that might make me ill. If I got ill I would not be able to attend the event or meeting, and this would be devastating for me. If the event is linked to a special interest, such as giving talks, it becomes part of my identity. Therefore, if I missed the event, I would have nothing left to tell me who I am, and I would feel broken and torn apart. I really struggle to form a coherent sense of self, and this is why I cling to interests or outside events that help to anchor me and give me a sense of who I am.  Without this external reference point, I feel as though I am nothing, and then life loses all its colour and tapestry.

I also worry about imperfection and decay. When I was younger it could take months before I would use presents such as bubble bath or pens because I wanted to wait for the best moment to use the item.   I also hated the thought that the item would run out. Of course this meant that many items would never be used or played with. I have got a bit better with this nowadays, but I still worry if I notice a tiny stain in a piece of clothing, which can be very distracting. I also fear getting older, and I am very nostalgic. I am always reminiscing about the past, and this makes me feel uncomfortable. I wish I could go back to childhood. It saddens me when I think what might have been if things had been different and  if I had received the right support when I was younger. Therefore, I spend a lot of time in the past,  and I still feel very much like a child in an adult’s body. I have  not fully acclimatised to the change from childhood to adulthood,  and because I see time so clearly, I am very aware of life moving forward at too fast a pace. This can make me feel out of control.

I would like to finish by saying that, firstly, it helps me if I have a strong interest to provide security and routine. Life is more confusing when I am between interests. A strong interest makes my life feel more ordered and connected. Secondly, I need plenty of advance notice before a change (ideally more than a month for significant change with regular reminders), along with an explanation for why the change is happening. And thirdly, I feel better if unstructured time is kept to a minimum and if I have a clear idea of what I need to do in a day. It helps me if other people provide the structure and order because it is mentally taxing trying to work these things out for myself. It helps me if people write things down with bullet points, and provide me with a ready made planner. All of this can help me feel less anxious.

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