The headache & heartbreak of doing academia with chronic migraine

Migraines: not “just headaches”.

I’m a part-time PhD student, with a chronic illness and a family. I have a grant that pays my fees, but everything else I need to live on I must earn by working part-time. Going into the PhD I had grand plans of world-changing research (don’t we all?). Since I’d managed my degree fine, I had the idea this would be OK too. Except I hadn’t worked when I was doing my degree; I was a full time student. And a PhD is so very much more than a degree.

I guess I went in a little naïve, but that’s not entirely my fault. You see, no-one talks about it being difficult for students with disabilities/chronic illness. No one discusses how these things are dealt with – or not – by the academy at large. No one explains that your inability to “keep up” due to your illness will be perceived as weakness, or that this will be communicated to you implicitly, insidiously, so that you come to believe it and question your place in academia.

This is what happened to me this year. I’ve suffered with chronic migraines for around 10 years now. They keep getting worse. As time has gone on, I’m at the point where I have almost exhausted all medication to control them.

For those of you thinking, “well, a migraine is just a bad headache” I’m going to describe a “typical” attack.

It usually starts with my thinking getting foggy. I start to feel tired and a little “drunk” (for want of a better word). My co-ordination suffers and I begin to walk into things: door frames, walls, furniture. I start to get lightheaded and movement causes vertigo. In this state I’m not safe to drive a car. My vision starts to become odd. I feel separated from reality, as if I’m watching myself do things. There are odd sparkles at the corners of my vision and this sense that nothing is really REAL.

And the pain hasn’t even started yet. I know when it comes it’s going to be bad. And it is.

The pain starts behind my left eye. It feels as though someone is trying to push my eye out with a hot poker, from the inside. This pain never lets up. It increases and decreases in severity, from agonizing to the point where I’m moaning and crying. If I’m lucky, some of the painkillers I have will help to lessen the pain; to drive it down to the lower end of severity. But nothing I have eliminates it, and believe me, my medicine cupboard is an opiate addict’s dream.

At this point, I am sensitive to light. Any light is painful. All light is painful. The tiniest sliver of light feels like someone is stabbing my eyes with pins and causes the hot poker to push harder. So I lie in a completely dark room, wearing one of those sleep masks you can buy for plane journeys.

I’m sensitive to sound too. Any sound. All sound. So I wear ear plugs, industrial ones that my husband brings home for me from his construction job. They are excellent at blocking outside sounds.

But then I can still hear my heartbeat. I can hear the blood pulsing through the veins and arteries in my head and neck. This sound is IMMENSE. I often lie in the dark, crying in agony, wishing my heart would stop, just so it would be quiet. This lasts for days: usually two or three, sometimes a week.

A week of wishing that your heart would stop because the sound of it is so painful.

The painkillers usually just make me sleepy, so I sleep. I have horrible and disturbing nightmares. I’m not sure if it’s the medication or the migraine that causes them.

Then the pain stops. I am exhausted. Completely, totally, utterly exhausted. Physically, emotionally and mentally exhausted. I can’t get out of bed yet; I can’t think straight, I can’t even speak properly. The feelings of being drunk, of vertigo and that sense of things not being real persist. This lasts for a day or two. And then I’m back to “normal” functioning.

Any one migraine can take me completely out of action for anywhere from a week to two weeks. They happen frequently, at best once a month.

I worked out that during my degree I had lost roughly a quarter to a third of my time to migraines. They are worse now.

Last summer I had a really bad run. My preventative medication stopped working and I was bed-ridden almost constantly. This isn’t stuck in bed watching TV or reading books. This is in bed with no light, no sound, complete sensory deprivation and constant agonizing pain.

You can imagine this took its toll. I had to interrupt my studies, whilst my neurologist tried to find a new treatment for me.

But I was also off work, and where I work has been pretty stressful lately, with fears of redundancies and staff layoffs. I had 10 weeks off, obviously sick-noted, but that doesn’t alleviate your fears.

And so we reach October. My medication is starting to work; the migraines are becoming less frequent (back to one or two a month). I manage to go back to work. But my PhD feels like an impossibility. My suspension is up, but I cannot cope.

It takes until Christmas for me to admit that something else is going on. That I’m falling apart at the seams. My husband has been desperately trying to coax me to the doctor, all the while, me telling him I’m fine. I’m not sure what happened, exactly, but I finally realised that I felt like I was losing my mind.

And so off to the doctor I go. I get diagnosed with acute stress, given pills, referred to mental health and am given another sick note.

I finally realise that I’m really unwell. I finally realise that I need to do something about my PhD. I’m terrified of asking for help: of admitting that I cannot cope. Because everyone else seems to be coping fine.

Everyone else around me is managing their studies and their life pressures and I’m just weak.

This is what I tell myself.

I decide that it is me that is the problem: I’m not suited to academia, and I’m going to quit.

Thankfully, my husband intervenes. I’m persuaded into having conversations with trusted colleagues. They make me feel better about the situation. But no one offers any practical solutions. No one suggests ways to make this easier for me. No one seems to understand that it’s my illness that has got us here: or, more precisely, the combination of my illness with academia.

And so comes the conversation with my supervisor. I’m having a really anxious day. I’m on the verge of a panic attack as I make my way to her office. My heart is racing, I’m physically shaking. I DO NOT want to have this conversation. I want to go back home and hide in bed and let someone else do this. But there is no-one else. I have to do this. I have to have this meeting in order to ask for help. This is what they call “self-advocacy” and it is bollocks.

It’s hard enough to be expected to do anything in that state, let alone make rational decisions about what I’m going to do about my PhD studies.

But, I have to. So I go into the meeting with a plan. A solution that will mean some pretty big changes to my research, but that will be more manageable with my condition.

Before I can even propose this, my supervisor suggests I take an MPhil: what people take when they’ve done good work but not enough for a doctorate. She suggests that I leave the PhD, because what’s so important about the PhD anyway? Academia isn’t all it’s cracked up to be. It’s not a nice, cushy job anymore.

There is an undercurrent to this: “You are not welcome here, you with your extra needs and your weakness and inability to keep up. If you can’t even make it through a PhD without breaking down, you’ll never be able to work as an academic”.

Despite all of my preparation, my promises to keep it together, not to cry: this broke me.

I sobbed and sobbed. I couldn’t breathe. I couldn’t think. And of course this was evidence of my ill health, of my unsuitableness.

I felt completely and utterly betrayed. I had always trusted my supervisor. She knew all of the things I had been facing. She knew – because I had told her before – how hard it was for me to go to her and ask for help. And yet her answer was to tell me to leave. Not to offer guidance, to examine what she could do to make things easier for me, not to go to others in the school and see what they could do as a whole. No, just get rid of me.

It hasn’t succeeded. I’m too stubborn and committed to getting the life I want. I’ve suspended my studies again. I’m taking some time to get better. Not well, though; I will never be that.

When I go back, I’ll be going back differently. I won’t be taking the bullshit excuses anymore.

Academia, you are a messed up place. I’m a smart, competent researcher and an excellent teacher. I’m an asset to you, and you’re pushing me away because you don’t want to make some changes?!

Not gonna happen. I’m coming for you, you abelist institution, and this time, I’ll be ready for the fight.

 

This post was kindly submitted by a third-year PhD student in a UK university who wishes to remain anonymous. For now. 

Image: ‘Migraine Monster’ by Lily Heartless. Licensed under Creative Commons (CC BY-NC-ND 3.0)

 

[Update: COMMENTS POLICY –

We’re very grateful that this piece was included in Freshly Pressed last week and we’ve had a record number of comments, so many that we now need to frame a robust comments policy.  For now, hear this: we will not be publishing comments that proffer advice on ways to improve the medical conditions of our authors, however well intended.

We work from the presumption that our authors are experts at their condition, and from the acknowledgement that most disabled and chronically ill folks spend a lot of their day fielding well-meaning suggestions that “If only you tried x your condition might just improve.” This is not a space for further input of this sort since, in effect, it’s part of the dis/ableist micrograggressions faced by disabled people all the time. The point should be that if only institutions improved their structural approaches to including disability, then no matter what your condition, you would be able to participate fully in academic life. Let’s fix institutions, not further the narratives that suppose the thing to fix is our bodies, or our methodologies for dealing with them. ]