Katie’s Story

Almost two years ago, I had just completed my MA Librarianship and was looking forward to finding a job to put everything I had learned over the years into practise. However, after submitting numerous applications and attending some interviews resulting in no offer of work, my mental health has taken a turn for the worse. As well as my pre-existing diagnoses of Generalised Anxiety and Panic Disorder and Autism Spectrum Disorder, I have recently been diagnosed with Obsessive Compulsive Disorder and Depression (oh, how I’m spoiled!). I want to talk here about how my mental health affects me and my job searching, and also, on a much more positive note, my experience of being a Digital Champion and how it helps me. I hope that others in a similar situation to me will find some reassurance and inspiration to become a fellow Champion, and that I can promote greater awareness of these conditions although please be aware that they affect different people in different ways.

Throughout my life, as early as primary school, there have been phases where my anxiety and panic attacks have been manageable but then there are others where I’ve really, really struggled. The past year has probably been the worst. Currently, I don’t go a day without feeling anxious or a week where I don’t have a panic attack. When my anxiety is building up, I start to feel very hot, my breathing becomes very rapid, my heart begins to race, and I develop a ‘lump’ in my throat which can make me feel as though I’m about to throw up or choke. My stomach hurts, I tick (e.g. I flap my hands or click my fingers repeatedly) and I become light-headed and nauseous. When I feel like this, I will always try some coping and relaxation techniques like concentrating on my breathing and meditating. However, sometimes, it’s so severe that nothing helps, and it develops into a panic attack. At this point, I feel like I have completely lost control of myself. I will be shaking, scratching myself and crying (I remember screaming when I was younger). Most of the time I’m rooted to the spot but sometimes I can be pacing up and down. I am not able to talk as I struggle to breathe. All of this on top of the original anxiety symptoms and the fact that it can last for hours on end, always leaves me feeling exhausted.  

I don’t always know what causes my anxiety but sometimes I do recognise some of the contributing factors. Being unemployed is definitely a major cause at the moment. It can strike at any time. I can be in the middle of watching a film, reading a good book or lying in bed at night when the thoughts suddenly hit me. Why can’t I get a job? What am I doing wrong? What happens if I never get a job? How will I cope without a job? When attending an interview, I constantly worry about getting there, what they might ask me, how I will come across, whether or not I’ve done enough research, or whether the job I’m being interviewed for is really right for me. The list goes on and on and by the time I get to the interview, I’m a nervous wreck. I also fret about what if I were to get a job – things like what if I were to get too anxious to complete a task? Will my anxiety distract or annoy colleagues? Will my employer be understanding and cooperative? I’m aware that some of you might think that these are perfectly normal thoughts to experience but for someone like me, they are extremely difficult to control. Indeed, they are so loud that they’re hard to ignore and because I experience so many of them at the same time, they’re completely overwhelming. When dealing with these thoughts and the subsequent anxiety, I find it very hard to relax, sleep or do anything at all because all of my energy and concentration is going into trying to calm myself down. So even sitting down and looking for jobs is sometimes impossible.

These thoughts and my current situation are also mainly why I now suffer with depression. A lot of the time, I struggle to get out of bed in the morning, thinking, “what’s the point? It’s not like I have a job to get to”. It can be especially difficult on a Monday morning, the start of the working week. Moreover, I can also have ‘down’ moments any time during the day. For instance, I may notice someone at a shop till or someone in a suit passing me on the street, and I’ll think, “lucky you to have a job” whilst being reminded of my own situation. Whilst I think that getting a job (as well as seeking help) will significantly reduce these feelings, the fact that I’m always being reminded of all the jobs I’ve applied for and all of the “on this occasion, we are sorry to inform you that your application has been unsuccessful” e-mails, makes it very difficult to motivate myself to look for work. Again, I ask myself what is the point applying when I am always left disappointed and my self-confidence so low?

My OCD may have developed as a way of coping with my anxiety but actually, it does the complete opposite and makes it worse. For example, I cannot leave the house without checking multiple times that the taps and my hair straighteners are off, and the front door is locked. I do this to try and calm my anxiety about the house possibly burning down, flooding or being broken into when I’m out. Yet, I’m still questioning myself for a long time afterwards (sometimes, I’ve reached the end of my street only to turn back to check again!) and stressing about turning up for appointments late because I’ve taken so long to leave the house. My OCD behaviours all seem completely logical to me but I’m learning that they’re really not. For instance, I won’t eat chicken at a restaurant because I’m so scared it won’t be cooked properly and will give me food poisoning but then I’m happy to eat other types of meat which pose the same (albeit low) risk of getting food poisoning. I have no idea why it’s just chicken I avoid. I have numerous other OCD behaviours that I never actually realised I had until I started receiving treatment and I worry about how I would manage them in a workplace.

All of these behaviours are quite common in those with Autism. Autism is a spectrum disorder which means that it affects everyone differently. For me, I have a lot of sensory issues with things that wouldn’t really bother ‘neurotypical’ people such as a strong dislike of certain textures like cotton wool, mashed potato and plastic dolls. I can’t stand wearing belts and will always opt for elasticated trousers (elasticated jeans…what a Godsend!), leggings or dresses. I hate, hate, HATE heat – I mourn the end of winter. Noise can also be an issue: fireworks make me feel as though I’m being shot, loud music with a heavy bass makes my head hurt and don’t get me started on heavy breathers or snorers. You’d be amazed at how the quietest sounds (often so quiet that it’s only me who can hear them) can annoy, irritate and distress me, especially when I’m trying to sleep. When I’m exposed to too much negative sensory stimuli, I feel like I’m being suffocated. There is no escape and it can result in what is referred to as a sensory overload which is basically a meltdown or in my case, a panic attack. I also have the same reaction when I feel like I am being presented with too much information at one time and, because I can be quite slow to process it, it all feels very overwhelming (this is referred to as an information overload). For example, being given a really long, detailed set of instructions to follow will stress me out as will being talked to by multiple people at the same time. Indeed, I need information to be provided clearly and concisely. Sarcasm is also a big no-no as I tend to take things very literally.

I enjoy interacting with others but due to my Autism, it’s a real effort for me so I can only do it in small doses. I often find it difficult to initiate a conversation so will rely on what I’ve heard or seen in conversations from scenes in books and on TV to help me do so. I also fret about whether I’m making enough eye contact or if I should be making less for fear of looking a tad creepy! I can get extremely bored if the subject of the conversation is something I’m not interested in and find it difficult to feign interest. On the other hand, give me a topic I’m interested in (I’m talking books, baking, my dog…DISNEY!), then I can go on and on…and on…and on. I am conscious of talking too much so I’m constantly debating in my head as to when enough is enough and I should stop, something which is incredibly difficult when I’m explaining just why Elsa from Frozen should be an official Disney princess! I’m also looking out for signs that I may be boring other people but stressing because I’m not actually sure what these signs are. In fact, they’ll probably have fallen asleep before I realise, and they’ll have to be snoring!

My Autism affects me in many other different ways as well which I’m not going to go into because, take my word for it, it’s a long list. Regarding how it affects my job hunting, I have to be very selective about what field I go into because it has to accommodate my needs as much as possible otherwise, I won’t be able to work to the best of my ability.  For example, I need a job that is local because I just can’t deal with the sensory issues that I experience when using public transport. I also need a job with routine (I find changes, regardless of whether they’re sudden or expected, very hard to adapt to), a small team and a quiet, calm working environment. The option to be able to work from home would be useful as well. Subsequently, I feel very limited when it comes to looking for work which can be very disheartening.

A couple of things that really help me cope with my mental health is keeping myself busy and socialising (even if it is an effort). I need to keep myself as distracted as possible and have a purpose so that I don’t have too much time to dwell on my negative thoughts and feelings. Whilst having a job would therefore help me, that obviously isn’t the case at the moment. This is why volunteering as a Digital Champion is really helpful for me.

Becoming a Digital Champion was recommended to me by my work coach at Universal Credit who felt I would find it interesting because of my background. Indeed, librarians are often involved with teaching information literacy and how to use computers, plus I was completing a cyber-security course for Neurodiverse individuals which she felt could be useful. I remember making the phone call to Tim and feeling very nervous. However, it turned out that I had absolutely nothing to worry about because he was so friendly and easy to speak to. I was delighted when he told me that Digital Champion sessions were held very locally to me as it meant I didn’t have to rely on public transport and home was nearby in case of emergencies. I felt very anxious again when I first started but the whole team made me feel so welcome and by the end of the first session, I knew that I definitely wanted to go back.

One of the reasons why I enjoy being a Digital Champion and why I feel it helps me is that I feel as though I can totally be myself. A lot of the time, I feel that I have to try and hide my conditions in case I draw unwanted attention to myself and I’m judged or ridiculed. I put on a façade most of the time which is tiring and uncomfortable. However, the other Champions have made me feel so comfortable that I was very upfront about my mental health from the start and I feel able to let them know when I am struggling with it. They have been so accepting and it’s reassuring to know that they’re OK with it if I have to cancel a session for a medical appointment, take time out if it’s getting a bit much or leave a session early.

Another reason why being a Digital Champion is great is that it gives me a sense of purpose and I feel appreciated. On Monday mornings now, I get out of bed with the purpose of helping other people, especially Lois, and that feels fantastic. Lois is another reason why I love being a Champion. She is really lovely, funny and gives great hugs! We have great fun together playing the online word game Text Twist, trying to get up to at least level 20 (although a lot of the time, we have to have help from the other Champions!). We always have a good giggle when we’re coming up with naughty words, making up our own and raging when the game accepts the American spelling but not the British! It’s a great distraction and as a result, most of the time, everything I feel goes away. Sometimes, I’ve had to leave early but she always understands. I feel like we’ve developed a strong bond and when she hugs me and thanks me at the end of each session, it makes me so happy. It makes a nice change to feel like that once in a while, and now, when I feel anxious or down, I try to think back to how I feel after my sessions to try and make myself feel a bit better.

In terms of the future, I honestly don’t know what lies ahead but I know that I have to take it one day at a time. Thanks to Tim, I was able to arrange some work experience with Fortis Living as part of their data protection team (something I had become interested in during my cyber-security course) and now feel it is the right career path for me to pursue. However, at the moment, although I’m still looking for work, my priority is to get the help I need so that hopefully, things will start to look up soon and I can get myself back on track. Until then though, I will definitely continue being a Digital Champion because for me, it is a sort of therapy in itself. It helps me escape my difficulties for a couple of hours each week and I’m surrounded by good people and having a good time. What is there not to like?

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