I regularly feature an interview with an expert on how to write about a character with a chronic illness or disability that they struggle with. While I still recommend getting a sensitivity reader for your work, use these posts to consider how you can accurately portray disabled characters. Today’s feature is chronic migraines with Nikki Albert. Shout out to Nikki for taking the time to answer my questions below!
1. Could you describe your symptoms and the experience of discovering them?
“I have chronic migraine with aura. I had my first migraine around 20 years old. A migraine is insane pain, light sensitivity, scent sensitivity, sound sensitivity, brain fog, confusion and visual/tactile/olfactory auras for me. I can get extremely nauseated or vomit. Before the pain stage starts, I have a lot of fatigue and when the pain stage is done a lot of fatigue.
“I often attribute the brain fog to both the nature of a migraine itself and the pain, which is difficult to think through. I can get pretty confused sometimes. I have trouble with my words verbally and written; using the wrong word, garbling words up, spelling things so wrong. I have problems with math and transposing numbers. I have trouble holding thoughts in my head and short-term memory issues. Also, it seems like I can’t retrieve information I need when I need to use it. I just forget things I know extremely well. My concentration and focus are quite poor.”
2. What do mild, average, and terrible flare-ups each feel like? Do they come on slowly? Do they hit you all of a sudden?
“With migraine attacks, it is usually sudden onset. But there are four stages to a migraine. The first stage, called the prodrome, can last hours and, while I do not have pain yet, I can have the brain fog issues. So in that sense, it can be a much slower onset. The whole migraine can last from eight hours to three days. Longer if it is a severe one. Since my condition is chronic they are also extremely frequent. It’s rare I do not have a day without a migraine attack.”
3. What are some of your biggest frustrations living with chronic migraines?
“The limited functionality I have is extremely frustrating to me. When I was working it caused a lot of problems due to forgetting policy to making numerous small errors all the time, to having problems communicating effectively. Just focusing was problematic and I would forget how to do simple things. I was never productive enough, or reliable or even dependable.
“Now, as someone who writes a lot, I have serious issues trying to be coherent and articulate. I can never seem to self-edit well. I make so many typos that are migraine-related and then try to edit them out with a migraine. For short writing pieces, it can be fine but for my larger works, it is a mess. I find that so very embarrassing. I love writing in many formats: blogging, non-fiction, and my fiction works. This limitation, though, is hard to get around.”
4. Does anything help you feel better or make life with this condition easier?
“Unfortunately, in the workplace, most things make it a whole lot worse. Being disabled there are a lot of things I do that help me adjust. I rest when I need to. I take mental breaks from activity. I can reduce light, scent and sound exposure in my environment. I can do my writing in increments when I am actually able to. Or not at all on days when I just cannot function. I can get people to look at my longer fiction works and see if they can peel out some of the obvious errors for me. I have programs that I can use for smaller works to catch some of the stranger typos while I type.
“I have gotten used to using my calendar on my laptop for reminders. And my phone for reminders. I am starting to do to-do lists on my Samsung that then reminds me of them in the morning. I have not quite gotten used to the whole Zoom call though. Because on a bad day, live, I can really fumble and mumble and sound like a moron. But email me or let me send in a video or text me… and, yeah, I can do that. Live is live and there are days the cognitive issues are going to impair me more than other days.
“Really, what makes life easier with chronic migraines and the brain fog associated with it is a whole lot of flexibility in my day. To do nothing, if need be, or pace what do that day and get done whatever I am able to, even if it isn’t much. As well as doing all the things I do for pain management.”
5. Do you struggle with any particular emotions due to your condition?
“Yes. I developed Major Depressive Disorder from just having to cope with the pain all the time. The emotional toll of trying to function with so much pain on a daily basis is immense.
“However, mainly it is just the frustration of trying to do things and being impeded by my own brain. Or the embarrassment when I have poor communication skills or cognitive functioning when I am doing something important with someone. Often failing to articulate my point or needs or achieve my goal. I have Bombed job interviews, for example. Lost out on freelance jobs. Confused customers at work. All sorts of issues that are just so embarrassing for me but also problematic for my success.”
6. How do other people behave around you? Do they treat you differently?
“Migraine disease is a real hidden disease when it is chronic. You put on a facade and try to function as best you can. People cannot comprehend how you can function with one if they know what one feels like. Or they do not know what they feel like and think it’s a ‘bad headache.’ During the more confusional states, well, they treat you like you are basically absentminded or a complete idiot. Or don’t know your job. Or are not proficient at your job. People who know me well know I was very proficient, but there were days, well, I didn’t know my address let alone new policies. I couldn’t think myself out of a paper bag. And often some people would judge my chronic migraine disease as laziness. As a desire to just not work. That was just insulting.”
7. What was your diagnosis experience like? How has your experience with doctors been?
“My diagnosis, in this specific case, was swift. I have migraine with aura and that aura makes diagnosis pretty easy for a doctor. Unlike other diagnoses I have had they have worked very hard trying to manage them over the years. They have, however, told me I was untreatable before when they ran out of ideas and that is not something you want to hear. Or ‘non-responsive to medication.’ That lack of hope is not good for depression.”
8. Have you seen this condition represented in media before? What are some common pitfalls or stereotypes writers should avoid?
“I have seen many drug commercials, which are ludicrous. Take a pill and then, hey, go dancing or to an amusement park! I have seen migraine attacks represented in books and movies and TV. Often limited in their representation. Mostly it is pain and nausea. Sometimes sound or light sensitivity. Not often the other weirder symptoms that come with it. The fatigue. The brain fog. The confusion. Or vertigo. Or even the fact someone can have chronic migraine disease. That is never represented and people are never even aware it is possible. Because with chronic migraine disease, treatment is complicated. And it isn’t a matter of laying down in a dark room and sleeping it off because we can’t spend our lives in a dark room. It isn’t feasible. So it becomes how to cope with chronic pain and have a life. No one represents that.”
9. What are things you can’t do because of the chronic pain? What are things you can do?
“That is a very tricky question. There are some things I definitely can’t do because of my sensitivity. I would never, for example, go to a concert. That would be ear and eye torture for me. So there are things I avoid due to the overstimulation of the senses. However, I did try to work full-time. It just didn’t actually work out well for me. I didn’t function well. I wasn’t reliable or dependable. I faced a massive amount of discrimination. Yet, I did persist for a very long time trying to push through the pain. So could I? I certainly tried. Should I have? Not really, no.
“Otherwise, it depends on pain level and how I have treated the migraine that day to what level of functionality I have. I do quite a few things based on moderate functionality. Especially at home when I can control of my environment (sound, light, scents). I write, read and do art. I do things outside of the house but I pace them or I limit my exposure so that I do not aggravate the pain too much. However, it is important for life satisfaction to do things and have some semblance of a life, so I do things I enjoy and I socialize. I am just careful about what I choose to do and how long I choose to do it for. And I always prepare for anything I do. If it is an outside activity (hanging out for a BBQ) I will bring a hat and sunglasses, and emergency medications. Always keep hydrated, of course. I also go for game nights with friends and that is something that often works fine for me but I know if the pain gets severe it is no problem to leave early.
“It is a matter of always being prepared. And knowing if things get severe you might have to leave wherever you are right away.”
10. What advice would you give to someone who wants to accurately write about a character with this condition?
“The character would have extreme one-sided throbbing pain. They could have an aura on one side as well. This could be visual or tactile or olfactory or auditory. (See an aura, or numbness/ tingling, or smell something that is not there, or hear something that isn’t there). There can also be disorientation, vertigo, confusion, brain fog. The aura precedes the migraine pain. Prior to the aura, they could have fatigue, a mood change, yawning. After the migraine pain, there can be immense fatigue as well. The migraine can cause light, sound and smell sensitivity. Light can be very painful and the eyes can hurt. Sounds can cause literal pain. Smell seems to be extremely enhanced. Nausea and vomiting are fairly common symptoms. The pain of a migraine is so intense it is extremely hard to think through. It is hard to hold information in your head or understand what people are saying to you. You may forget how to do a task you have done a million times before. Aphasia can happen where you forget words, or the wrong word comes out, or words come out all garbled and you don’t even make any sense at all. I have forgotten my address. My phone number. Simple things.
“Spacial confusion is an interesting one; for example, I was confused after I got off an airplane once, on a red-eye, travelling alone. I got lost in that airport for a good hour. I couldn’t find the exit. Common sense would have said to find the stairs down to the main level. I kept looking for an exit sign. When I asked the few people around I couldn’t make sense of their directions or keep their directions in my head. So a character may seem very befuddled and confused because of the pain and the migraine state itself causing spatial confusion and just confusion itself. Asking people for help may not even help when it isn’t understood.
“Likewise, the hallucinations are another thing that could be fascinating for a character. The visual auras can be sparkles, waves of light, black blotches—which can consume the vision for a short time to an hour. Or they can be more complex. Alice in Wonderland Syndrome can cause visual distortions that can really be disturbing, although that is rarer. Auditory auras can be simple or complex as well. I had one that sounded like a music box playing. I had it over and over for months with every migraine. And olfactory ones are equally strange. Odours that are simply not there. Smoke, foul smells like sulphur, food cooking… all sorts of weird things. if you have a silent migraine, without the pain, one may not know these are a migraine at all—one may think their house is haunted!
“With vertigo and, specifically, vestibular migraine, there are a lot of vestibular symptoms that come with it. A person can look drunk when they are not because of the fact we feel like the ground is literally undulating beneath our feet. With every step, the ground ‘falls’ a bit and we stumble around looking like we are intoxicated and even fall into things, or plain fall. If we have vertigo attacks, we will have to lay down, because of the intense spinning of the world or our heads (like if you were extremely drunk). You can get extremely dizzy when you don’t have the vertigo. Obviously, balance is an issue. You can have the migraine headache pain… or not. Nausea and motion sickness are common with this type as well. Also problems tracking motion. And being very motion-sensitive.
“Also, keep in mind a migraine in its entirety can last from four hours to three days typically. There are more than a few types of migraine types that one could use in a story and a lot of symptoms that could make a character’s journey difficult for sure.”
Nikki Albert has been chronically ill in one way or another since she was a child, starting with hypermobility syndrome that gave her joint pain and insomnia. It wasn’t until she was a teen, though, that the joint pain, fatigue, and insomnia picked up the pace. When she was twenty, she was officially diagnosed with Fibromyalgia, but received no treatment. She also developed persistent migraine auras, migraine-associated vertigo, asthma, and depression. Nikki named her blog the Brainless Blogger after the infamous symptom of brain fog and fibro fog. She writes about chronic illness, chronic pain, and invisible disability awareness, posting research, articles, and the occasional review.