Chronic pain as a patient and a scientist; what I want you to know - part 1

[I’ve been asked to turn a social media thread, about talking to university students as both a patient and a scientist/artist with chronic pain, into a more accessible/shareable post. Here it is. If you need a version of this post in any other format, please contact me. The artwork in this post is from ‘The Little Things Add Up’, a Morse code drawing project about everyday ableism.]

I’m an interdisciplinary artist, and I’ve worked for several UK universities as a postdoctoral researcher in both art and science. I have a pharmacology PhD (interdisciplinary ain’t just a word, I am up to my neck in it, send halp) so I come at chronic pain as both a patient and a pharma-flavoured scientist. I’m also disabled, and am definitely on team spoonie. Sometimes I give talks to students in educational institutions about what it’s like to live and work with chronic pain. Soon I’ll be talking to pharmacy students as a pain patient, in the uni where I got my PhD in pharmacology. I think it's great they run sessions where student pharmacists can learn from patient experience, and I wish more institutions did that. But… It also reminds me the last time I wasn't in pain was June 2015, and right now it’s 2018. Completely pain-free life seems like an aeon ago. So I’m taking a moment to reflect on what I’d like to communicate with students, in whatever discipline, about being a pain patient. Obviously talks will vary based on the subject students are studying – when I give a talk to pharmacy students, I talk about the meds I take, side effects, the impact of community pharmacy, yah de yaddah. But if I could only get across three things? This is what I’d share.

Before I start; patients can also be scientists. Pharmacists can be patients. Medical professionals, & students in art or science or any field are human. So, it’s very likely some of the students and teaching staff could also be chronic pain patients, and I don’t want to exclude anyone by talking in an ‘us & them’ fashion (although sometimes that’s unavoidable.) After all ~20% of the population have some kind of disability or chronic illness. There’s a lot of us about, and I hope it helps any student-patients to know they aren’t alone. Also; this is not about me bashing patient-facing staff, or scientists. It's about sharing my experiences... Not all of which are positive. If that bothers you, think about why. 

The 3 most important things I want to communicate are as follows, & each point is expanded on below;

  1. You can't tell how much pain someone is in by looking at them (You. Really. Can’t. Idc how well you think you can. Just no.)

  2. Chronic pain has a high cognitive load & energy cost, so it is tiring and affects all our daily activities

  3. Life goes on, & I love my life, friends, & work. Pain isn't all of it

1) You can't tell how much pain someone is in by looking at them

When I interact with other people, I get subtle & not-so-subtle suggestions that it can't hurt that much, or that I'm making it up, because I’m not howling or crying. I've experienced this from consultants, surgeons, pharmacists & nurses, co-workers, family, you name it. I think it's very hard to understand, unless you've experienced chronic pain, how we can be in immense pain & still competently (albeit tiredly) go about our day. Medical professionals are not immune to misunderstanding this. But medical professionals, like pharmacists, have much more influence on our treatment than most people. I think it's sometimes challenging for even highly trained medical staff who don't have chronic pain to believe it’s even possible be in that much pain without howling & crying. But humans get 'good' at being in pain over time. (Plus I could spent all today howling but ya know… I got shit to do, eh?) I’ve been blessed with a GP who is an absolute treasure, been cared for by many great nurses, and had at least one surgeon who had a sense of humour and was willing to show me the surgical equipment and microscope that got used on me in their lunch break! But the people who have negatively impacted my care, from nurses, to PTs, to surgeons… They really did bring me down.

So I want to ask students to question themselves - if you haven't experienced chronic pain yourself; 

  • What do you think may change over time when a person is in pain for >6 months?

  • Do you think I was howling & crying on day 180 in the same way I did on day 1? (Hint; I wasn't)

  • Do you think every person reacts to pain in the same way on day 1 anyway, or days 180, 365, 900… (Nope, we don’t)

Pain doesn't have a 'look' - over time we generally get better at psychological and physical coping strategies for managing pain. Hopefully, management with medication gets refined for each of us over time too. Pharmacists (community & hospital), GPs, nurses, consultants, physiotherapists... All these people have influence over pharmacological (& psychological) management of my pain. It is really important for those people to critically examine their own preconceptions & unconscious biases. Not just biases toward pain patients regarding their behaviour, either. There are racial, gender, disability, sexuality, class, and educational biases in how pain is treated. (These are well documented, & I am not your google – but here is an example of the potentially fatal consequences - Dealing with that is draining & has a psychological consequence for patients. Which brings me nicely to tiredness & spoons…

2) Chronic pain has a high cognitive load & energy cost

Although I'm not yelling or crying all the time now, being in constant pain is still an energy-requiring process. I have to constantly use energy in ignoring pain to go about my day. For example, right now my brain is constantly saying "your neck hurts, your back hurts, your leg hurts, your foot hurts, your neck hurts, your back hurts, your leg hurts..." It takes a lot of spoons to ignore (see; spoon theory and chronic illness Chronic pain is like having someone prodding you with a pointy stick 24/7. It's constantly up in my face. How pointy/loud it is varies. But I never get a day off. It's a loop.

That is tiring and distracting. So pain is hard work. But again, if you don't experience it, it can be hard to understand. If people can't note something obvious physically wrong with you, they may assume that you're lazy/faking. That's frustrating, especially if it's coming from people who can influence your clinical treatment. If it's a bad day, my brain is so busy managing pain it can be hard to talk or hold a long conversation. Sometimes even clinical staff have struggled to see why I could be so worn out, & thus to believe me. Dealing with their attitude then adds to the cognitive-pain-drain.

Honestly, I'm not really sure what to say to students with respect to rectifying this other than;

  • Please PLEASE pLeAsE believe patients

  • Please believe yourself if you have chronic pain too; because we sometimes internalise prejudices or ableist beliefs that apply to us

I have no great art or science way to explain how chronic pain sucks up personal resources, it just does. I'll maybe ask students what they think would help them understand that that facet... Odds are some of them will be pain patients too, & they're already pharmacists/artists/researchers/etc-in-training. Learning goes both ways, anyway. So I'll probable ask them how they'd explain to a colleague. (Aside; it's quite a privilege being a pain patient with a PhD in neuropharmacology because 1) medical staff who know that seem more inclined to listen to me 2) I get to share with/learn from students in my fields of work and study. Who knows, any one of them might end up being my pharmacist 1 day! That would be funny.)

3) Life goes on, & I love my life, my friends, my work. Pain isn't all of it...

Many people get a little bit pity-party/inspiration-porn-y when I talk about this and again, medical staff are not exempt. We all need to do better at this. The key advice I can give you here is; try not to make assumptions about other people’s quality of life or lack thereof. Don’t assume you know about our competence & capabilities, or our relationships... If you ever feel like saying any of the following, please stop and think;

  • “It’s so inspirational how you’ve carried on working”

  • “I don’t think I could carry on”

  • “Your partner/family/employer/whoever is so brave for sticking with you”

  • “I’d kill myself if I was you” (yes people say that pretty damn often)

I’m not here to inspire you. You don’t know if you could carry on if you were me, but I’m willing to bet you could, and that you certainly wouldn’t kill yourself. How'd you feel if someone effectively told you your life wasn't worth living? Or if someone used you doing normal stuff as inspiration-porn to make themselves feel good? How would you feel if someone said your partner was 'brave' as if you're a burden – I didn’t grow an extra head, it’s not some unfathomable change in my relationships!?!

Pain patients like me, and maybe you too, can get that crap * A N Y W H E R E * any day of the week, thank you. I do not need it from healthcare professionals. As I said, my GP is A+, a treasure. But I still get medical staff that will answer my questions to my partner when I'm sat right there… As if I'm a toddler. Or who'll tell me how 'amazing' it is that I still work, or how great my partner is for staying. There's a lot of assumptions in all of those things. And we're all human & mess up like that sometimes – I know I still fail, and assume things about my fellow disabled people. But in a healthcare context, I view it as training failure. So try and apply a little stop-and-think in your approach to others.

I hope part of the point of inviting patients in to chat to potential future researchers in arts or science, and especially to pharmacists/scientists/etc is to encourage us to think about how we might feel if we were on the receiving end of something – students might well be if they’re a patient too – and to consider the impact of our words.  It's a strange feeling to me, though... I'll be there talking as a patient but I've also been on the other side as a student, as a scientist studying human diseases, and as an artist working/making art with patients…

…In conclusion; my interdisciplinary life is weird AF, haha. But really, those 3 things are what I would communicate to students in a perfect world. I’m sharing it here in case it's useful to anyone else. Thanks for your time.


Translations of all the Morse code spirals in the the artwork in this post can be found here, and more information about ‘The Little Things Add Up’ project can be found here.