Please see the Exhibiting Pain site for my completed PhD research which examined how creative representations of life with long-term physical pain are interpreted by audiences, using online social media exhibitions. Thesis available to read on request.
A strange phenomenon is occurring for me… since being awarded my PhD earlier this year, I have only updated my title in two places. One is my place of work because it is relevant to my job. However, I have not updated my twitter account (which I use for work/professional purposes) beyond describing myself as an independent post-doc. Unusually, I have not added ‘Dr’ or ‘PhD’ to my name, twitter handle, etc.
Please don’t get me wrong, I have no problem with others doing so. In fact, I completely empathise with the varying motivations to use it e.g. having worked so hard for the qualification, coming from a background where it is unusual, showing expertise, pride, etc.
For me, it raises issues which I believe are connected to the medical experiences I’ve had.
I teach about the biomedical model of health and care – where medics and healthcare professionals hold the power and elicit reverence. I resent this! Medics are not all knowing and they often have big enough egos that added reverence sits really uncomfortably with me. I am an advocate of person-centred care which, in theory, allows the patient to hold more power and control over their own care than in the traditional biomedical format.
Of course I agree that respect is due – it is due to all individuals, whether they hold the title of ‘Dr’ or not. Of course, ‘doctor of philosophy’ came before the medical profession’s use of ‘Dr’ and is therefore the ‘original’ (and best?) use of the title. The issue of ego and power becomes even more apparent in medicine when we consider that consultants revert to ‘Mr/Mrs/Ms/Mx’ rather than ‘Dr’. As though ‘Dr’ is now below them. (I’m sure there are other arguments about this but I’m basing this piece purely on my perception growing up around medics in the course of my own care and my home life.) I have witnessed many staff members correct patients when they mistakenly refer to a consultant as ‘Dr’. It doesn’t go down well to use ‘Dr’. Again, I understand that this is about a distinction of merit and expertise and the work that goes into it. But, for me, it has just come across as arrogant!
Since updating my title on my work records, I have received emails from students addressing me as ‘Dr Main’. Prior to this, I never received messages by my previous title (which I continue to use on my driver’s license, bank, passport, etc.). Somehow, since becoming a ‘Dr’, I now seemingly warrant a level of formality and reverence I didn’t previously receive.
I am really uncomfortable with this. Perhaps this is my own imposter syndrome. I think it is also a discomfort with the perceived need to laud the opportunity I’ve been lucky to have, to do a PhD. Don’t get me wrong, I have worked hard for the doctorate and in my school years I don’t think anyone would ever have considered it feasible for me.
However, I cannot detach it from the reverence linked to medics which I am so uncomfortable with. Perhaps that’s why I don’t wish to be treated with that attitude. Perhaps its just the imposter in me eating away any pride I should have. For me though, I cannot help but see negative connotations to doctors for some people, myself included, because of the medical profession. Therefore ‘Dr’ is not always a good thing to laud.
Earlier this week, I was asked rather unexpectedly what my favourite children’s book was (or should that be ‘is’?).
The answer took no time to think of. It has been The Secret Garden by Frances Hodgson Burnett since I received a copy for Christmas one year. I think I must have been about 7 years old but I’m not certain.
The copy is hardback with lovely thick pages and colour plates. It has a smell. I love the smell of books. It has a cracking sound when I turn the pages. Those pages have a yellowed tinge to them. It makes me smile wistfully when I hold it.
I noted some of these traits as the reason for my choice. However, they do not touch on the story. The reason the story holds a special place in my heart has taken me a long time to understand.
In the book, Mary is bullied and teased. She is sullen and disliked. She accepts that other children do not like her and feels at odds with the world around her. When she finds The Secret Garden, she discovers there is magic in the world. Re-growth and beauty are possible. She finds a place in the world that is hers, through which she also finds friendship and acceptance. Mary Lennox moves from being an unpopular child with no space in the world of her own, to a feeling of belonging and joy. She finds that she is capable of happiness, and of being accepted and loved by others.
In childhood, I spent my years feeling displaced from the world around me. I did not feel that I belonged among my peers. I stood out as ‘other’, as being different, just as Mary did. I was not especially cheerful and struggled to find peers who accepted me. I longed for a place of secrecy and magic where I could hide from the world, surrounded by beauty and peace. A place of nurture, as a garden is.
My love and nostalgia for the book has continued into adulthood. I think the same sense of wanting a place of sanctuary, peace, belonging and safety continues to the current day. I guess these are common feelings (especially in times of a pandemic). For me, I believe this longing is, at least in part, influenced by my feelings of not belonging during my childhood development. To have experienced these emotions in childhood, largely because of my experiences of pain, hospitalisation and disability, has perhaps heightened the lingering love I have for this book.
This time yesterday I was in possibly the worst pain I’ve ever experienced. I say this as someone who has lived with pain since the age of four. And as someone who survived the first 48 hrs post major surgery without opioids two years ago.
I get a lot of pain in my spine and when it is particularly severe I find that my sternum and front of rib cage are also affected. My oxygen sats sometimes drop and i feel like indigestion is about to kick in.
Last night the pain was so horrendous my entire torso appeared to be in spasm, my abdomen was extremely tender. I felt sick and was clammy from the pain. However the back and front rib pains were familiar so I held on to the idea that this was simply a more severe version of what isn’t entirely unfamiliar to me.
When I reached the point of seriously considering phoning 111, I decided to call my Mum and Step-dad (a GP).
I was able to confirm there was no temperature, gastro issues, coughing, vomiting etc. But I couldn’t breathe in very deeply because of the pain and it took all my concentration to speak and sit.
It was a horrendous night and there was no position I could sit or lay in that I could even call bearable. I was faced with needing to take opioids to deal with the pain. Nothing else was touching it. But if i did that, I would be dealing with withdrawal effects for the next 2 weeks because of how my body now responds to them.
This therefore became a case of whether I could tolerate the pain enough to avoid the opioids.
Usually I class my pain as particularly severe if it brings tears to my eyes, which has been happening recently due to some oddities of the left hip. However, I couldn’t cry with this pain but it was certainly more severe.
Does this mean that there is a level of pain where I cannot cry because it is so bad? I have had to readjust my understanding of what level of pain is a number 9 or 10. Showing once again how ineffective the pain scale is and how complex it is to understand our pain experiences.
I now have the memory of the pain but that is entirely inadequate to enable me to assess the pain or recall it comprehensively.
This was also an interesting experience because I consider myself adept at understanding how best to manage my pain. Yet in this period of pain I doubted myself. I knew all the things my step dad said to me about it and what to do. But I had questioned myself.
This was partly in response to the sense of being overwhelmed by the pain. A sense of inadequacy to do anything helpful for it. The questioning of ourselves is what pain does though.
During this very long night I wondered how I would work if the pain continued at the same level. Whether I would need to succumb to opioids.
I managed not to. I survived. I question whether I can do so again next time it happens.
There is no point or message to this post. It is simply a statement of suffering; for, on this occasion, I would definitely say that I was suffering from pain.
I get asked about my hip pain when asked how I am. My hip pains (there are many different pains in both hips) are generally the least of my day to day difficulties. That’s not to say they’re not a problem, they truly are. However I’ve had a lifetime’s practice in dealing with it. The pains elsewhere are more difficult because I’m less practised but what I find most debilitating these days is the fatigue.
Debilitating is really the best description for it. I can’t focus, think, put sentences together, barely keep my eyes open, except when I plan to sleep. The thought of making a cup of tea or meal is overwhelming at times. I forget to take my medications. Thankfully the cats don’t let me forget to feed them.
I am sure depression is playing a role in a lot of these feelings. But even on good mental health days, the exhaustion and overwhelming weight of trying to move around a body fuelled by pain is draining.
I find that I often wonder why I experience such fatigue now. Is it because I’m older, am I lazy, is it solely the depression, am I just unfit… The thoughts cycle on.
The reality is that when your body does not move willingly, feels heavy and unrested, with multiple pains in multiple locations, it is perhaps unsurprising to find you are perpetually exhausted. I need to find a way to let myself accept that fact though because it takes a change of mindset to accept my hip pain isn’t the only thing affecting my body’s ability to function.
I find I am frequently grateful to people when they do not have a problem with me using walking aids and having some limitations.
Recently I wrote of the ‘burden’ of dating someone who is disabled. I have since reflected on my reactions to people I encounter through online dating and how they respond to hearing that I would turn up to a date with crutches.
I have never not ‘forewarned’. For my sake more than anything- I wouldn’t want to deal with witnessing their response.
But why do I feel a need to forewarn and why do I feel so indebted when someone agrees to meet me in spite of said dodgy hips and need for crutches (and no, it’s not rare for me to be asked if I can still have sex).
It strikes me that my expectation should be that it would not be an issue for the person. However my natural instinct is that it will. That I am a lesser person, hindrance, imposing limitations upon the other person and not being worth those compromises. A burden.
It is difficult to believe in what my friends tell me I am worth. When you have been bullied for your condition, you take those experiences onto your own sense of identity. You believe that you should be grateful for kindness on the rare occasions that you experienced it. You believe you will not find someone willing to take you and your pain on.
You believe the person who told you that you will be alone and unable to cope.
It takes enormous strength for me to correct these thought patterns when they occur. I have some wonderful friends in my life who give me a severe talking to!
I am working on not devaluing myself and my own needs. I’m trying to break my beliefs that I should be grateful to those few people who still see me as possibly a viable partner. Who see me as not being a burden. Or at least worth some compromises.
In the darkness, I am watching. I see your face as it relaxes as you let out a soft snore, only to be pulled back in a grimace as the pain rears up again. I watch as you roll from side to side, asleep but not really, searching for a position where your body will be comfortable. I watch as you finally doze off again, lying on my arm this time, your breathing finally settled into a calm, easy rhythm. The tingles as my arm goes numb tells me that I should move but I dare not for fear of interrupting what few moments of peaceful slumber you do get. There it is, perhaps three or four minutes pass this time before your legs decide they need to move. Your brow furrows and your lips pull taught as you shift again, still convinced, or at least hopeful, that a new…
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People who live with persistent pain are big fakers. There, I said it. I live with someone with persistent pain every day and I see this acting first hand. She is such a good actor in fact that even as close as we are, sometimes I miss the signs. Oh, she isn’t acting about having pain – that part is very real. She is just great at pretending everything is normal.
My wife keeps herself incredibly busy since leaving work on permanent disability due to MS. She is usually up long past my bedtime and often up again in the morning before I leave for work. She is on several volunteer boards and is constantly stepping in to help with fund raisers, support groups and other noble causes. On top of this she trains our dogs, including a future brace and mobility service dog for herself, which requires on…
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People with chronic pain (and other invisible conditions) are constantly having to manage the emotions of people around them. There is a conflict in how much to show you are struggling, not wanting to burden someone, not wanting to admit it (to yourself or others)… the list of motivations goes on. It’s a complicated problem. We feel a need to be understood by other people but that requires divulging how difficult things can be sometimes and that raises a lot of conflicting emotions.
We carry this burden of ‘responsibility’ for our own emotions and those of others around with us, together with the pain itself. I have written previously about the difficulties of conversations around my pain: ‘My illness narrative: A question of conversational responsibility‘ .
When it comes to romantic relationships, this burden takes on another dimension. A recent NY Times article commented on disabled people and dating – referring to the burden entailed. (I haven’t read the article, I don’t wish to, but I became aware of it through Twitter.) This has led to counter hashtags on twitter, relating experiences of relationships, the benefits of dating someone who is disabled, that disabled people have lots to offer partners, etc.
These tweets have led me to reflect on my own experiences with relationships and dating, in relation to my pain. When I was 20, I had a psychiatrist who said,
‘Who is going to take you on, with all your issues?’
Of course, there are many elements to this that are wrong and it has done me an awful lot of damage over the years. 20 years on, my rational side can see that this isn’t true. However, that rational side is usually dampened by my insecurities and a lifetime’s experiences of feeling that I am a burden and too difficult to ‘take on’.
The experiences of feeling I am a burden are numerous. They relate to family members’ behaviour and comments, those of ‘friends’ – both as a child and an adult, work colleagues, on dates. Not to mention that psychiatrist.
One dating experience led to the posts, ‘I live with pain & that’s OK‘ and ‘I am not my pain but it makes me who I am‘. The guy ditched me early on because of the limitations that he felt my pain would place on his life. These included the prospect of him feeling guilty about forcing me to have sex if he was in the mood and I wasn’t. The potential guilt he referred to was specifically about forcing me while knowing I was in pain, not forcing me in general. So, yeah, lucky escape on that one… Another issue for him was the difficulties I might have with raising children.
In this he touched upon something that he didn’t realise was a very significant and sensitive topic to me. Don’t get me wrong, I have no known biological reason for not being able to reproduce. However, it would take an enormous toll on my body – during pregnancy and birth but also in the years that follow. (It is not uncommon for people to have asked me if I can physically have children and I have had to explain that it is the raising of the children that was my bigger concern.)
I have been married and it was a good marriage. As divorces go, it was probably the best possible too! I continue to love and respect him very much but I can’t pretend that the children issue wasn’t a concern of mine. I wanted so much more for him, in the way of a family life, than I knew would be possible with me. Of course, there is more to our breakup than this issue but I can’t pretend it wasn’t on my mind. It brings tears to my eyes to see the family he has now – I am so happy for him.
The marriage breakup was another cause to be reminded of the ‘burden’ I pose. Someone advised me to stay with my husband because he ‘would look after’ me and asked how I would manage without him. I felt that this was unfair on my then-husband and demonstrated a sense of doubt of my ability to cope alone.
While it is exceedingly difficult to cope alone, I am not willing to be with someone for the sake of being ‘looked after’ (for my sake and theirs). Indeed, being on my own has enabled me to reach a much greater understanding about how my pain affects me and also how I best manage my pain and fatigue. I am so much stronger for it and I understand more about how to negotiate my pain as part of a relationship (see ‘chronic pain – a relationship third wheel‘). When it comes to dating apps I used to wonder what to say about it (if anything). It is both an issue and not an issue – for me and in a relationship.
So, if I carry the burden of chronic pain and the responsibility of how to communicate that to others, what burden am I to those people? I may or may not have too many ‘issues’ for someone to want to take me on; but I suspect it may be more accurate to say that I have too many for me to want to take on the burden of being in a relationship!
You did not see my face
As we said hello
You did not hear the desperation in my voice
As you talked over me
You did not see the plea in my eyes
As you rushed to guess the problem
You did not hear my hope to be listened to
You did not see the hope slipping from me
You did not recognise the problem
You did not see my tears
As we said goodbye
Lockdown continues and people share on social media the places they wish they could visit, who they long to see, the hobbies they want to return to…
I am becoming increasingly bitter and resentful. I’m ashamed of these feelings but I suspect that I am not alone in them (or perhaps I am merely seeking to reassure myself). However, expressing them publicly goes against our socially acceptable behaviour of stoicism and positivity in public.
I’ve written before of my experiences of COVID-19 lockdown as a disabled person. However, that was some weeks ago and the situation is taking its toll on all of us.
While I am fortunate not to be in the ‘vulnerable’ category, in terms of how the government are currently defining it, I am in the situation where any virus exacerbates existing fatigue and this could pose a significant problem for me. What this has meant is that I am unable to win the supermarket delivery slot lottery and I can’t stand in queues to access shops (and spend the amount of time trying to get round with social distancing).
Consequently, I have to attempt to go to small local (more expensive) stores at times when they are quiet (start and close of business, which isn’t very helpful with a body that doesn’t do mornings and struggles with staying awake past 5pm). I live alone (an hour away from friends and family) so there is no one else to help with this. The last time I saw someone I know was the 17th March. Since then, I have turned 40 and had my PhD viva but had to ‘celebrate’ alone or virtually. Yes, it is taking its toll.
Now I am entering into moaning and if you are still reading you are considering exiting. Even when there isn’t a pandemic, people do not wish to hear about the disabled/pain related difficulties that others’ experience. If those experiences have a ‘good’ story attached to them there is more inclination to provide empathy and sympathy. If the story is ‘merely’ the everyday long-term experience, people do not wish to know of the difficulties.
At present there is talk about the new ‘normal’ and how people’s behaviours may be different post lockdown – more community spirit, more opportunities for remote working, socialising and activities, etc. The cynic in me hopes to be proven wrong but presently I suspect such sentiments will pass as everyone returns to old habits, relishing their social contact and removal of physical limitations.
Where will that leave those of us who continue with a lifestyle barely dissimilar to COVID-19 lockdown.
We will continue to struggle. I hope that there will be greater empathy and opportunity for us but, hearing people complain of all the things they are suddenly unable to do, makes me fear that the return to doing these again will be relished so much that those of us living this life as standard will quickly be forgotten. Who wants to be reminded of such times or feelings, after all.