Being a creative and living with chronic illness like migraine.

As I sit and write this (the intro at least), my head is pounding, my eyes hurt, I’m a touch sweaty and have been experiencing nausea on and off all day. None of this is unfamiliar to me, as I live with chronic migraine, and have since I roughly 13 years old. I’m now 26 and while I’ve had many successes in my life, it’s hard not to feel like I’m fighting an uphill battle on those days that it really comes in swinging.

For those of you who aren’t familiar, migraine is a “severe and painful long-term health condition,” as descried by The Migraine Trust, and “attacks usually last for between four hours and three days.” Very little is known about migraines and what causes them and research is slow. Around 10 million people in the UK live with migraine, which results in approximately 25 million days lost from work and education each year (The Migraine Trust), not to mention the millions of pounds of financial burden it puts on the NHS.

"I was diagnosed with M.E. (Chronic Fatigue Syndrome) in my early teens and was re-diagnosed with Fibromyalgia several years after. My illness affects my physical and mental energy and cognitive function, and causes severe general pain, mostly in my muscles.

I got my first job when I was 24. The previous 8 years I had been slowly building up my ability to do any sustained activity. My employers are aware of my condition and I started by working 3 half days a week with the goal of slowly building up eventually. At the time I was on a high dose of Gabapentin for the pain and Mirtazapene for depression, appetite and sleep. After a year I increased my hours, and a year after that I was working fulltime. I didn’t stick out like a sore thumb anymore, and apart from having to take tablets frequently, my illness was no longer on the surface. Blending in is great, but it is a double-edged sword to anyone who suffers from an invisible condition. I’m still in a lot of pain, but I’m used to it and have painkillers. I still have brainfog, am easily exhausted, have terrible memory, have difficulty stringing sentences together, but in order to cope I overprepare or outright avoid situations where I would struggle the most. It’s been a few years now and during the pandemic I became a parent. Everyone knows that new parents are tired all the time, so work gets shifted around, then a couple months go by and it’s supposed to get easier. The label fades, and people assume you’re doing better. They ask you how you are, and they wait for you to be polite and say “good” (it’s poor etiquette to weepingly confess how much you’re suffering), so they can pick away at the fading label, each time closer to treating you like everyone else again. I’ve now had Fibromyalgia longer than I lived without it. The label faded and I was excited to let it get peeled off, and now in some ways I’m struggling more than ever. In future I will try to be more open about my struggles, and continue to advocate for compassionate leadership, in and outside of the workplace, that considers people of all capabilities, visible or not. > FIBROMYALGIA is a long-term condition that causes pain all over the body. It can also come with extreme fatigue, problems with mental processes and difficulty sleeping.

A fellow creative that I admire greatly had this to say, but wishes to remain anonymous.

Alongside my freelance illustration, I work full time at an agency as a designer and illustrator, 9-5 Monday to Friday, and naturally my neurological disease affects my job, but in more ways than my employers and colleagues could ever understand. The thing about living with a chronic condition, particularly those that are invisible, is that it has an impact on you, even when you’re not having an episode.

On days when I’m experiencing a migraine attack, I struggle with moving too much, light and smell sensitivity, loud noises, nausea as well as the trademark throbbing pain (think someone drilling into your skull). I’m also filled with anxiety and dread, and all I can think of in terms of my future is headaches and the pain it brings. The prescribed medication makes me fatigued, achy and foggy. I often have to put things on pause, but that can only stretch so far. With about 30-50% of my days being migraine days ranging from 3 to 10 in severity, I can’t afford to have it shut my life down, both financially, and from a getting-on-with-life point of view. I can’t have life happening at half speed at a time when the world is always speeding up.

On the other hand, days without migraine are riddled with their own challenges. I live with a glass of my favourite squash near me at all times, makings sure I keep hydrated. I avoid strong smells like pungent perfume, artificially-scented air fresheners, strong soaps and even some foods. When events are upcoming, I live in dread of a migraine that either means I have to cancel and let down loved ones, or push through the pain to at least be physically present there, even if my mind is not. I don’t drink alcohol, I don’t stay out late and I can’t carry out the exercise I should. I plan and make choices every day to limit my chances of triggering an attack and even then, it may not be enough.

Of course, with any invisible illness, it can be hard to get others to understand just how much it affects our lives. 1 in 7 people in the UK suffer with migraine, with it impacting women three times as much as men (the NHS). There’s the common misconception that migraine is simply a ‘bad headache’, with unsolicited advice about the disease being thrown in all directions, from “have you tried drinking water?” to “maybe you should eat less fish?” People often think that we’re choosing to miss out on things, that we’re ‘letting it win’ and should just push through it. I’ve also gotten pretty good at hiding the pain of it over the years which no-doubt does not help the perception of how much migraine affects me.

Imposter syndrome is something that I can confirm is an odd side-effect of living with a disease like migraine. Because I spend almost every day dealing with it, and am a for the most part successfully functioning adult, I get the regular feeling that I’m exaggerating my own suffering. That it’s ‘not as bad as I make out’. Even I think to myself, isn’t it just a headache?! Imagine thinking that about the cancer you’re battling, or life-long diabetes.

"I’ve considered myself an artist for most of my life, and I’ve lived with chronic migraine since I was about 14 or 15 years old (23 at time of writing). For the longest time, my migraine was debilitating.

They made me nauseous and ill, and I couldn’t do anything but lie down in a cold, dark room with a wet cloth over my face. Going through art school was difficult, and when I started I was getting migraines at least 4 times a month, which didn’t help when I procrastinated all my work until the last minute. I would try to power through so I would have something to show at class the next day, but it would always end up being forced and therefore not a true reflection of my artistic ability or personality. After a while of trying to navigate making work and dealing with migraines, I decided to get my daith pierced at the age of 18. (A daith piercing passes a ring or bar through the centre most cartilage of your ear, nearest to the entrance.) The piercer was quick to inform me that he didn’t think the piercing actually prevented or helped alleviate migraine pain at all, and that everything I read online was false. Well, call it placebo, but after getting my daith pierced my migraines dwindled from 4+ times a month to maybe once a month. Additionally, they weren’t as severe. It’s rare nowadays for me to have a migraine bad enough that I have to stay in bed.

Izzy Looney is a Tattoo Artist based in Opelika, AL, USA (Instagram @mushiesandink)

Living with migraine as an illustrator is a big challenge, because it has such a wide reaching effect on the flow of your life. Unsurprisingly often accompanied by anxiety and depression, migraine and other chronic conditions can cause a lack in productivity and creative drive, as well as poor quality of life (Healthline). A chronic illness can zap your personality, making you feel like a shell of your potential self, and with a lot of our work being self-driven the perpetual low mood and lack of motivation is a significant hindrance. Time feels more precious and must be used wisely, for who knows when we’re next capable of getting things done! But of course, as well all know, creativity cannot be forced, and it can be difficult to get into the right headspace when your flow is interrupted and you are not feeling your best. As you know, being an artist of any kind requires you to pour a lot of yourself into your work, particularly for those of us who freelance. We have to drive our business forward at all angles which requires a lot of energy, making nurturing our passion and profession while coping with a chronic illness even the more exhausting. But nonetheless, we must go on.

I won’t lie and say that I’ve found the solution to balancing my disease and work life. It’s a constantly shifting relationship, with both demanding the most attention. I’ll admit that most of my coping comes from medication, which in itself has been a rocky and frustrating journey. There’s been lots of candidates, and so far I’ve not found the golden ticket, but I must remain hopeful that I will one day get to that point. Thankfully at the least I have now found a doctor who is genuinely interested in helping me, so that’s something!

The last 18 months has been disruptive beyond our imagination (please don’t make me say ‘unprecedented’) and I’m riddled with guilt to say that I have enjoyed it. I have been able to work from home in a quiet, comfortable and calm environment, allowing me to manage my migraine in a way I’ve not been able to for years. I don’t feel my regular cycle of daily anxiety that I used to in the office, meaning I’m generally happier. I’ve been more creative in my freelance work and personal projects, exploring new avenues! I have been able to reduce my stress levels, and treat my condition differently, such as sleeping in an extra hour after taking medication should I wake up with a bad head. Therefore I’ve taken less sick time from work, meaning my productivity remains high, the company can bill for my time and I don’t lose out on wages (we don’t have any sick pay at my workplace). It’ll be interesting (and nerve-wracking) to see how the balance shifts again once I’m back at the office but, as with all things, it’s difficult to predict which way that balance may tip.

I realise this is a somewhat clinical recount of my disease, and perhaps one day I’ll delve into a more emotional telling, but to be quite honest, I bury that away as much as I can, to survive it. It is hard to live this way, and I look forward every day to advances in both the medical field as well as the UK workplace to make this a better and more balanced life for all of us. Until then, we have to take any windows of opportunity we can to pour our work out into the universe. Remember that you are strong, you can do this, and your creative energy is important in this world!

In addition:

It’s taken a while to get this article out, and since writing we’ve returned to a somewhat normal life again. For me though, this has meant a lot of change at work. I’ve been back at the office for two months now. We’ve got a new office, much more spacious and convenient for lunchtime breaks and all that. We’ve had new staff join us again, including me losing a manager (who also happened to be my partner) and gaining a new one. Since going back to working from the office, I’ve noticed a 50% increase in migraine days, with some being quite disruptive. It’s hard to nail down why this could be as there’s a whole host of triggers involved in all corridors of ill health. Could it be the bright artificial light I’m sat under all day? Perhaps there’s extra stress that I’m not perceiving? It could also be the more constant level of noise, or just not being in a comfortable home environment. I may never know and, of course, it could settle down nicely – we’ll have to see there.

Something positive to come from the pandemic was to show our bosses that we’re very capable of working from home, and following a very recent staff survey they have decided to extend us the option of one work-from-home day a week from October, as well as the flexibility of shifting our working hours a little. So in terms of coping, I now have the opportunity to use those work-from-home days for days when I wake up feeling fragile, having a migraine or a migraine hangover, which I expect to help greatly, which is fab.

Here’s hoping to more and more better days. Love x