The headache & heartbreak of doing academia with chronic migraine

Against a red background, a skull screams, a malevolent creature sitting on its head

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. ]

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40 responses to “The headache & heartbreak of doing academia with chronic migraine

  1. My adviser also told me to leave with a Master’s–in my case due to depression, anxiety, and an assortment of physical ailments that happen reliably any time I’m working too many hours under too much stress. If I was struggling with the PhD, she figured, I just wasn’t cut out for science.

    I did leave. I blamed myself for not being able to handle my mental and physical health better, for not being able to keep up 60-80hr weeks while remaining healthy and sane.

    I now get that the demands were unreasonable, but I’m still glad I left. I DON’T need the Phd, and I don’t want it bad enough to subject myself to a world that will forever tell me I am a failure because of how my body works, regardless of the contributions my mind may have to offer.

  2. I’m not sure what general field you are in, but I feel like I’m hitting similar resistance in my PhD work. Without sick & disabled tenured faculty to look to, we end up attempting to be trailblazers….which really just compounds the already stressful PhD work and the already stressful work of being an ill/disabled person. With the folks I know, it seems like those of us that do work in health-related fields catch more flack for it though.

  3. I’ve got ME, Fibromyalgia and depression which I kind of manage now but sometimes it really flares up and leaves me feeling like I can’t go on – I’m determined to do my PhD next year though. I’m currently doing a Master’s (24,000 word dissertation halfway done so far!!) and I’m lucky that my supervisor is so supportive, because not many I’ve met are. It’s really good to know there’s others like this out there because I often feel really alone at my university having multiple conditions – though sometimes this alone spurs me on! Great post, amazing blog 🙂

  4. I am not in the exact same situation, but I feel your pain. I wish you continued success in whatever capacity you are able to achieve it.

  5. Hello! I’m currently an undergraduate with a mild case of anxiety, and I admire your strength so much in getting through all of this. I used to have migraines as well until I went on an SSRI for anxiety. You might have heard of doing that already, but in case you haven’t, it helped me out!
    But more importantly, academia is definitely ableist! It’s the most absurd thing to exclude or give up on capable people who need a different type of support to be excellent. My heart goes out to you, and I wish you all the luck!

  6. I really appreciated this post. I completed my master degree a few years ago and am contemplating returning to complete a PhD. I really struggled at times while working on my master degree, so I’m not sure how much I really want to to return to academia. And, I I too suffer from migraines, although not nearly as sever now as they once were. At one time, they started taking over my life and I worked very hard to identify triggers and continue to work to stay away from them.

  7. And here I was beginning to think no1 understood to that degree. Tho I haven’t suffered from that affliction I did have about 9 teeth degrade piece by piece exposed nerves and all. I never felt I could convey the severity of something so invisible. I was going to write an article about the experience, however said any other way it would not carry the weight your words do. So from the bottom of my heart, thank you.

  8. Interesting read on migraines and I understand and sympathize with the crippling effect of migraines when they strike and I’ve suffered with them for years but with me they are pretty rare and few and far between, so I’m lucky in that sense but unlucky in the sense that I get them, and they strike me every every 5 years or so on average in clusters and when they do strike they almost completely wipe out my mental functioning for anywhere upwards of 12 hours with unfeasible pain before abating and letting me sleep it off, with after effects of up to a week afterwards, like a hangover from a heavy drinking binge on a bad batch of dodgy alcohol.

  9. Thank you thank you thank you for sharing your story. I live in the US and am on disability due to Bipolar Disorder. I was diagnosed my junior year of my Bachelor’s studies. At the time I was also struggling with several herniated discs in my neck with accompanying chronic migraines. I barely made it through my last two years of schooling. I graduated cum laude simply because my “before” GPA was a 3.9.

    Luckily my migraines are mostly at bay due to 3 “miracle” medications. I can so relate to your struggle and I hope your blog goes viral. You are not alone….

  10. I have had chronic migraines since childhood. That was one of the best descriptions I have read about the process of migraine. I have had Botox for migraine and it works very well every twelve weeks. I can no longer afford the pre pay Blue Cross has imposed on expensive stuff. Thanks and end rant.

  11. I’m only going into my third year of my Psychology undergrad but with aspirations of going I to research I’ve been actively seeking out articles and posts from those in positions I will no doubt find myself if I continue pursuits in the academic field. While admittedly a little frightening, I’ve found honest posts such as this one to be invaluable in helping me get a realistic picture of what I’m setting myself up for…the harsher the costs I like to think, the higher the benefits. Anyway I recently came across this very inspiring TED talk that I think readers of this blog might resonate with. For me it put the whole scientific process into perspective and I think it’s an important thing for anyone in a creative discipline to watch, especially early on in their career! Here’s the link; http://www.ted.com/talks/uri_alon_why_truly_innovative_science_demands_a_leap_into_the_unknown

    And thanks for your posts, finding some really great pieces on this blog

  12. As I migraine suffer myself, I understand 100%—I am so proud of you. You are so much stronger than you think. Thank you so much for sharing your experience. I wish you the best with your husband, and your studies. You’ll kick a$$ when you go back! 🙂

  13. I feel deeply for the writer since I’ve had the same experience of chronic migraines. The more I’ve been in academia, the more I hate it, and not just because of the challenge of juggling chronic pain and illness.

  14. I’m so sorry you went through this. Academia appears to be a very unsupportive (and toxic) environment for anyone with chronic illness or disability. I have mental health problems (anxiety, depression and suspected bipolar awaiting diagnosis) and although I managed to complete my PhD but the cost to my mental health has been enormous. I’m now at the point where I may not be able to work at all for a while. So what use is my PhD now? I’ll never return to academia, that’s for sure.

    I was wondering whether you think stress (or possibly depression and anxiety) were triggers for your migraines? I for one have experienced chronic migraines when my anxiety and/or depression levels are high. I know some antidepressants can be useful in treating this.

    I wish you all the best with your health and future!

  15. I feel your pain. I had chronic insomnia throughout my undergraduate degree. I wanted to pursue a graduate degree in law or accounting but realized that was not going to happen as I had to take two breaks and finish my undergrad on a part time basis. No one really gets it. People look at you and you seem healthy and they just give you a look like “oh who isn’t sleep deprived these days”. Its not the normal i missed an hour or two here and there… The entire body goes haywire. You walk around like a zombie about to fall over any minute. You get anxiety, loud heart beating in your throat, aches and pains, loneliness and the fear that everyone seems to think you “look fine” even the doctors. I went from being an active participant first year to barely being able to speak from the anxiety. Now I have been diagnosed with Fibromyalgia. I am just glad to have an answer. You are very strong willed. May you find success in all that you plan on doing.

  16. Teaching with migraines is atrocious. Sometimes I get so sensitive to light that I have to wear sunglasses to work, and heightened smell from the headache makes me want to throw up everywhere. I hope everything gets better for you.

  17. Academia, in particular research driven science, I have found, much to my dismay, is filled with people who would happily step on your neck in order to get a leg up.

    Don’t stop if this is what you know you want because we need all the good people we can get in order to create some kind of balance.

    All the best.

  18. Don’t let anyone shape your perception of yourself. If you think you are strong enough to get that PhD, you are strong enough. Its a decision. I never listen to what anyone has to say about me – good or bad. Truth is, they don’t know any better than I do what I’m capable of. Keep going and you’ll find out.

  19. You might like to check the update on the comment policy on the post page. Any comment offering any kind of suggestion for what the OP out to do or try medically will not be posted. Thanks for the comment though – do feel free to repost with that in mind.

  20. I have been a sufferer of migraines for years. It is a hellish life when pain sucks all the joy of ‘being’ and ‘doing’ out of you and sidelines you. I have missed out on many good times because of the sick headaches. Good luck to you.

  21. I appreciate the author’s post. I have multiple illnesses, including migraines. Mine are nowhere near as difficult as hers, but certainly play a part in the struggle to deal with chronic illness and disability. I am in the early days of pursuing my 3rd Master’s and I reserve the right to pursue my Ed.D. However, I am not sure if I will ever get past the block of trying to get a job in a community college in my area of expertise that requires 3 to 5 years experience in order to be considered. How do you get the experience if you can’t find someone to hire you? I don’t even want to address trying to get that job and telling them about the multiple illnesses/disability. I have already felt stigmatized and in other work I was not supported with my request to include service animals as a reasonable accommodation. Employers seem to feel that they get to decide what reasonable is for you and not consider that you have already tried the methods they think are sufficient. It is bad enough trying to get your education, it seems it is just as hard to be employable/employed and use the service dog to make it possible. I support your desire to finish that PhD and I hope you will find someone on your committee to be a part of the circle of support. This can be the difference between struggling or failing outright. Don’t lose hope!

  22. I have faced this exact same problem. I suffer from severe anxiety. I believed this part “I decide that it is me that is the problem: I’m not suited to academia, and I’m going to quit.” enough that I made the decision to switch to MPhil.

    Now I’m trying to switch back to my PhD after realising all too late that I want to finish my PhD. I may not want to stay in academia but I definitely want to be involved with science and research but in a different setting. Good for you for sticking with your gut feelings.

  23. Chronic illness is so easily misunderstood & sometimes just completely glossed over. My own chronic health issues are treated as unimportant by my employer & many of my coworkers, because they’re not visible “cause celeb”. I have chronic & life threatening allergies that cause a range of symptoms, including migraines, stress hives, and generalized anxiety with random panic attacks. It’s a struggle, but I refuse to give up because they either don’t believe me, or think I’m exaggerating my issues for the drama. My life has more than its share of drama without exaggerating this, thanks.

    Thank you for posting this.

  24. Reblogged this on motherfudgelover and commented:
    I, too, suffer from chronic migraines. Ones almost exactly as described here. God, they suck so hard. I can’t imagine going through a 4 year college stint with them. I made it through a one-year term in a community college for a certification and thought THAT was MAJOR accomplishment. I was so, so wrong.

  25. I have neuromyelitis optica and experience hemiplegic migraines…. I’d love to get back into education (currently on statutory sick pay after being paralysed).
    “I’m not suited to academia, and I’m going to quit” – so that your disability made you feel this way, that it overshadowed so much of yourself at that point. But inspiring to hear that you’ve realised your worth. Go get ’em.

  26. I found self advocacy meetings the hardest ones to attend. If you are taking mainstream higher education, it feels painful to accept help. As an autistic, it felt as though I didn’t belong among the normal folk. I don’t know if this message will make it through to you, anonymous author, but it means so much to know that others have gone through a similar experience.

  27. Amazing article. I believe the healthcare team needs to lead understanding and advocating for peesons with chronic pain. Too many health care workers underestimate the acute and long-term consequences of chronic pain. This undermines the validity of the patient’s illness in every other aspect of their life. I want to share this with every doctor I know. That’s where I will start, I hope it helps.

  28. I just read and really sympathised with this article. I am also a chronic migraine sufferer and I am in my 4th year of a part-tIme PhD, and I am also working and juggling other commitments, including supporting a partner with clinical depression. I think there is a lack of education and understanding about the impact and effects of migraine, especially within academia where as others have said you are not supposed to admit you are anything other than supervmotivated and super fit in order to compete in this very competitive field. I have also had repeated and long attacks and lost many days due to migraine, and unfortunately I often have to prioritise doing my paid work and the fallout is on my (unfunded) PhD. I know many people are in my situation of doing unfunded PhDs part time and working but I think that whilst universities are keen to take on more PhD students there is little recognition of the levels of stress they put students under when they have to work, as well as produce research, plus of course go to conferences, do papers etc. the responsibility is with the institutions to change. they need to provide better support. This experience has put me off working in academia in the long term as it doesn’t seem to make the space and understanding for people with migraines or other disabling conditions.

  29. I have suffered with chronic migraines for 21 years. I was a registered nurse and finally had to go on disability in 2005. Being allergic to morphine my help is limited. They are skull splitting 5 to 6 days / week. Is there any help out there?

  30. Reblogged this on The Blog of Small Things and commented:
    This. This. All of This. I have recently begun to have migraines and I suffered a whopper yesterday. It is really helpful to know that others are experiencing the feelings and struggles that I am experiencing. I felt like I was reading my own blog post while reading this.

  31. I am probably out of place here. I am a nurse; a practical one at that. A little heart beat in the wide arteries of the studies of science and medicine, but if there is one thing I know for sure; pain. I have suffered from migraines for over fifteen years. Severe enough to keep me hospitalized for five days last year, and was fired from a former employer because of this. I had promised someone very close and special to me before he passed that by now, at this stage in my life, I would have a doctorate. I haven’t been able to even finish my associate’s. The condition is so debilitating. I sometimes barely have the energy to work. So, I do relate to your pain. But, I also relate to your desire to show everyone how much you want this for yourself. Just as much, at almost 39, I want it for me. It moves you and lives within you. Academia is so unfair, it punishes those of us that want it the most….how screwed up is that. I recently had a professor who told me “I hope your medical condition resolves quickly.” If that were the case, I would have “quickly” obtained a Bachelor’s more than five years ago.

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