“But you look so well!”: My life as an associate lecturer, PhD student, tutor and author with chroni

“But you look so well!”: My life as an associate lecturer, PhD student, tutor and author with chronic illnesses.

As I write this, I have just spent the last week in hospital on IV treatment and I am now recovering after having the stuffing well and truly beaten out of me. So, this dialogue, the one you’re engaging with right now, is something that I have had no choice in. Although no one is forcing me to write this, I have only been back at work a matter of hours and I have already had to explain my illnesses to a client. I probably have to have that conversation once or twice a week for reasons which will become apparent. Yet, I’ve read and been inspired by so many articles on disability and outlook or work, and never dared do that myself. Not online. I was too scared that people would think I was unable to do my job. I kept seeing it as writing about my biggest flaw.

But I changed my mind, so here I go: It’s probably no shock to those who know me that I battle with anxiety and OCD. Yet, I always get unusual reactions when it comes to my blood disorder and immunodeficiency. My blood disorder consists of an allergy to iron and therefore I’m regularly anaemic and have IV iron pumped into my body with many pre-meds to – delay – the reaction while the nurses get the iron into my body. We tried actual iron solution once; it didn’t go well (shout out to Dave, Mum and Trace who came to my rescue that day!) So, I am now limited to an iron solution. The pre-meds work…for a while…and around 12-16 hours afterwards that is when the horrid effects start. My immunodeficiency is a lack of a protein in my blood which enables me to fight off infection. Subsequently, I have had: numerous severe infections (30 a year at one point); ended up in hospital with no white blood cells and in isolation; had pneumonia well into the double figures and I’ve recently found out I have structurally damaged my bladder. I take daily antibiotics which I’ve had to change, and these have their own side effects. My biggest issue with the side effects is that they are all bad; you never get good ones, you know, like MAY CAUSE EXTREME HAPPINESS or MAY CAUSE EXTREME INTELLIGENCE. Nope. Not found one yet.

Anyway, back to how this all works. So, when I tell people that I need them to be a little careful with meeting me if they are ill, or the fear of getting too close to people who have recently been ill, always causes a little flurry of exclamation or embarrassment. Trust me, I sat on this for twenty plus years, there was no one more embarrassed than me! I have to express the seriousness of my conditions, when I look so well. I look so happy. I have so many plates spinning …ill? Surely not! Welcome to the world of someone with a chronic illness – I’m happy because I’m here, I look well because I have spent years perfecting my makeup, hiding those eye bags and I have many plates spinning because I am self-employed and therefore have to spin my plates to pay the rent. That and to allow our sassy cat, Kitty, the luxurious life she deserves.

I primarily write horror and crime fiction and having these illnesses has been the BEST source of inspiration. In one of my books, Valor Diamond (Book One), I have a character make an emergency IV with a rusty nail and rubber tubing…. Hmm, sound familiar? That’s because as I sat there after having both of my arms in hot water, being stabbed multiple times to get a vein, with no success, as I ugly-cried into my tissue due to my needle phobia, I had a Blair-Witch-snot moment and I thought, ‘this cannot get any worse.’ BOOM. My fascination with horror kicks in: yes, it can be worse. And there we have that scene. That’s one example, but ALL my work is littered with things I’ve come across in dealing with these illnesses. In a weird way, I feel lucky that I have those experiences as a source of inspiration. Additionally, I work from home most of the time and therefore this suits my needs too. But again, I have the niggling doubts that because of this people will think I am unwilling to get a 'normal job’. Two issues there: I’ve never been normal and normal is boring. So, I shrug my shoulders and keep living ‘my best life’ (I’m cringing as I wrote that – sorry -- but you get my meaning).

Now, my tutoring is probably the most challenging to balance as I tutor Y7 onwards in English and Psychology and there’s always something going around the schools. Often, I am working with students who need intense sessions, plus ALL my passion and motivation to get their attention, build/maintain/stabilise rapport and their interest which can zap a lot of my energy. I love being able to help students 1:1, to see their confidence grow and watch as they see my excitement at what they’re going to do with their lives (as my school days were not good – but that’s another blog). Yet, explaining to parents that they need to be extra cautious with what they may perceive as minor illnesses is difficult and some haven’t always listened. Then, I’ve ended up with an infection and unable to work for a few weeks. They soon learn that we can catch up easily on an hour or two, or better yet-- we can Skype, but fitting 4+ hours in a short amount of time isn’t as easy as it seems with clashing schedules. My biggest fear is that the parents will think that their child’s education is not my priority, and even as I write that, I see how odd that sounds. Some person’s child’s education before my own health. And I’m good, but I’m certainly no magician. I am not in control of their entire school life. My introductory comment to the students is that this is your education and your successes are yours alone; you do the hard work, not me. So, there – logic flawed already – but you can see where this fear may originate from. I still tutor alongside everything else because I continue to experience a high level of support from those around me; I love to do the same for others.

Now, my associate lecturer work includes working in Film Production, Film and Television, Creative Writing, running various writing workshops and those types of things. As I was finishing my MA (Horror and Transgression, obviously!), a lecturer sat me down and asked me if I’d thought about lecturing, “Are you having a laugh?” was my response. His words have stuck with me to this day, “I think you’re born to lecture.” He was serious. After some thought, and with great attempts at trying to cast away the anxiety I carry about public speaking, I agreed to do one… but just the one. The nerves and self-doubt caused a mental riot, when people start jumping on cars and looting, but in my head. Then 10 minutes in, DOUBLE BOOM. All the nerves had gone and all I can sense is the intense energy and passion I have for this subject bouncing back off the 109 faces in front of me. The 109 students who want to hear what I have to say, that want to learn, that want to create the next big thing. And then, as I’m stood there, I realise that I can help them. I can help them because I know a bit about horror. I can help them feel like I do right now – like I can do anything I want if I put my mind to it. Could I do that? Could I be the person who unlocks potential from someone who never knew it existed?

Maybe.

Well, the one-off lecture turned into quite a few and the nerves still come back every time I teach something different, but they soon go and I’m back into it. Lecturing for me is just indescribable. The following year, both my MA supervisors (shout out to Jo and Teresa!) emailed me within half an hour of each other to tell me about a potential PhD opportunity. I remember how I struggled with the MA, which eventually won an award, I remember the sacrifices that must be made for such an undertaking and I cannot forget the small hole in my soul that burns to learn more, to better myself, to rise to the challenge, to make those around me proud. Well, what harm can applying do?

And here I am. The AL work and PhD are a great passion of mine and (for me) they feed into my work as an author. The more I am exposed to other ideas, interpretations, perceptions, understandings, the more the little cogs begin to turn and then suddenly you have another two novel length series you want to write, alongside the 100,000-word PhD and lecturing and tutoring. Yet, the PhD (horror television reboots and female fandom, if you’re interested!) has been the most challenging to my health. Perhaps it comes back to the ‘working from home’ thing, but I’m always reading, writing or planning. My mind never stops and there is always a (self-induced) pressure to exceed my own expectations, as well as others. Then, my mind gets tired, followed by my body. It can’t distinguish workable ideas from non-workable ones, or soak up that last chapter, every piece I write has to be improved which can be disheartening at times and the nerves set in once again. With my body working ‘doubly as hard’ (according to my consultant) just to function, I go into overdrive and there is no off button. I’m still learning how I manage this, how to shake the doubt and have confidence in my ability to argue my idea and absorb reading quickly, but I am acutely aware of the time frame that’s placed upon this project. I know I have been given a three-year window to complete this opportunity and that is always at the back of my mind. Particularly when I have just been in hospital and had time off. And so, we end where we started. Thankfully, I have the best support system in place both personally and academically, and THAT is what keep my passion and motivation a float (you know who you are!)

When I was diagnosed, and I realised all the needles, the pain, the infections and the tiredness were a life-long thing, I made the decision to live the life I wanted to live, to do it NOW - not tomorrow, and bring as many people as I could along for the ride. My life isn’t always easy, but it’s always exciting. I get to do so much cool stuff, don’t you think?

• Sorry for any mistakes in this blog – trying to write an update and recover, so bear with! 😊