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.
My annual orthopaedic check-up stimulated food for thought, as usual. This year, I was faced with a registrar who did not manage to conceal his surprise at hearing that my revision hip replacement was the 9th open surgery on that hip. He sent me off to x-ray with the comment that he would speak with the consultant while I was gone as ‘[I am] a complicated case’.
‘You don’t say,’ thought I as I crutched off to radiography to go through the usual process of getting myself into the correct position on the bed (having planned my clothing that morning so that no changes would be required to remove metal zips, buttons etc.) and comments being made about how I have obviously done this before… I appear to have reached an age where they no longer give me lead protection for my ovaries though.
The registrar proceeded to ask about my pain levels and function. He asked why I had the replacement done, given it had not been loose. I was blank for an answer.
It’s difficult to explain how mortifying that is. To have gone through major revision surgery, now experiencing bone loss as a consequence (a process of osteolysis has occurred to the femoral head which means that the greater trochanter has dissolved), not to mention the numerous other consequences of it, and to feel that maybe you should not have proceeded.
Two weeks later I sat in an appointment with a gastrointestinal consultant to discuss the results of recent investigations into the cause of my abdominal pain. It had all the symptomatic features of gallstones but the evidence suggests otherwise.
I sit listening to this information, thinking over all the discussions about the difficulties of chronic pain not being visible on tests and scans. The surgeon went on to say that, unlike his peers, he was willing to operate and remove the gallbladder in order to help determine if that had been the cause of my problems.
‘A bad surgeon wants to operate, a good surgeon knows when to operate, the best surgeon knows when not to operate’ rang through my head with a bunch of red flags and alarm bells.
He followed up that if I consented it should be with the knowledge that I may still have pain afterwards. I nearly fell off my chair from laughing at that.
His eyes looked rather unashamedly excited when I said that the number of operations on my hips is in double figures. Yet I still live with chronic pain, so I have no wish to perpetuate the cycle.
A lifetime of medical encounters and operations have taken a far greater toll on me, physically and emotionally, than I generally let on to people. So I am relieved at the prospect of not going through another operation and I cannot face another conversation about why I had surgery when it hasn’t helped and it was known it might not do so going into it.
Age and experience bring with them an abundance of caution and lessons learnt the hard way. When we are in pain and struggling, we become desperate. We put our trust in those with the expertise to help us. But we do so with the knowledge that nothing comes with a guarantee of success. I went into surgery knowing this. I was horrendously stressed and anxious when I had the revision replacement. I’ve never been so worried about an operation before and few people truly could understand this. Especially as hip replacements are seen as so run of the mill (luckily, for the majority of people, they are).
When it comes to future surgery I don’t know how I will make the decision to say yes. I can no longer pretend that this lifetime of medical encounters hasn’t affected me on many levels. Most of all, I’m scared of making the wrong decision. Again. At present I do consider the last few operations to have been mistakes of my judgement. However, I need to show myself the kindness to remember the reasons I had for making those choices when I did. After all, it could just have easily have worked out as I’d hoped.
June is hip dysplasia awareness month and so I am reflecting on where I am now. 5th July will be 3 years since the revision hip replacement was performed on leftie (as my left hip is affectionately – and not so affectionately- called).
Last October I had the annual review x-rays which showed that a piece of wire has broken off the hip and migrated down my leg. It also confirmed that the right hip is loose. However another finding was that the top of the femur has undergone a process of osteonecrosis – bone death in simple terms. Ironically this is what I experienced as a young child and had played a part in my needing surgery at ages 4 and 5.
I chose to do my very healthy impression of an ostrich and bury my head in the sand, refusing to ask what the implications of that are for any future revisions. Given the consultant has previously said that it needs to last until he has retired (approx 30 yrs), I don’t imagine his response would be encouraging. His reason for saying it needs to last so long is because he has declared that he never wants to have to touch that replacement.
Today, as I am around a hospital environment, I overhear someone stating that ‘they are happy with it’. I don’t know what ‘they’ were happy with but surely an important question is whether the patient is happy with things. Yes, I know that way lies a minefield…
Just as I saw on a Facebook group someone was asked if they were happy with their new hip. I had visions of them saying no, they’d have preferred a different colour or something.
These flippant thoughts are undoubtedly something of a coping mechanism for me.
Nearly 3 yrs on and I am in a position where lockdown in a flat, with limited resources for exercise, has meant that I have experienced significant muscle wastage and am back in the state I was in 1 yr post surgery. I didn’t realise how much strength I had lost until it was very bad.
This is what many people don’t realise, the bone, metal, ceramic, they are all just one part of this process. The muscles and soft tissues have sustained huge damage and are full of scar tissue also. Scar tissue that isn’t going to recover, no matter what physio I do. So, I’m back to doing physio and trying to regain strength and stamina. I do so with the knowledge that these things come with inbuilt limits for me. People worry about the external scar and its appearance but, as with so many scars, it is the internal ones that are harder to manage.
So, 3 yrs on, am I happy with my hip? Well, the surgeon got a new hip in, which was by no means guaranteed. It doesn’t give way like the last one did but there are concerns with it and a lot of work to rebuild what I can of it.
Overall, yes I guess I am pleased with it. Not as much as ‘they’ are though and I do wish there had been a choice in colour…
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!