Please see the Exhibiting Pain site for my PhD research which is examining how creative representations of life with long-term physical pain are interpreted by audiences, using online social media exhibitions.
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.
I wrote last week of my bemusement watching the world respond to lock-down and self-isolation measures, in the attempted control of COVID-19. People are finding technological workarounds to activities and habits they took for granted.
As I did last week, I continue to be grateful that the world is opening up for those of us who have long required these things. However, I am already beginning to tire of the ableist discourse surrounding coverage and responses to the phenomenon of spending considerable quantities of time ‘stuck’ at home.
Others, who share my experiences with self-isolation, are frustrated that people now profess to understand our experiences of living with restricted social contact and claim to be able to speak for us. They cannot.
There is a significant difference between a temporary adjustment to this way of life, knowing that a return to outside activities will occur in due time, compared to living with the fact that this is forever.
I have said that I am perhaps fortunate that throughout my life, since a very young age, I have spent enormous quantities of time alone, including in hospital for months at a time. My ‘advice’ to people has been that their adjustment to lock-down requires a change of mindset to adapt to a new style of living, albeit temporarily.
While my experiences have prepared me for COVID life, they had not prepared me for the widespread reporting and anecdotes of how hard it is for everyone to live in this way. There is no recognition given to the fact that some of us have done so before COVID, and will continue to do so afterwards. Disabled people are mentioned in passing with older people, grouped into ‘the vulnerable’ who must quarantine themselves and are presented as somewhat disposable.
Supermarkets promote time slots available for older and vulnerable customers but we don’t all identify ourselves in that way. Who decides who is vulnerable in this time of need? The same people who decide whether someone is of sufficient value to get a ventilator when availability is limited?
Due to pain and fatigue, I cannot physically manage to go shop to shop in the hope of being able to find a golden packet of toilet rolls or paracetamol. Doing so would also increase my chances of contracting the virus, as well as the risk of me spreading it.
However, the delivery and click and collect slots are all taken for the next 3 weeks for every supermarket in a 15 mile radius. Are they all taken by people who need to quarantine or just people who managed to grab a slot where I did not? Again, the needs of the disabled population are overlooked by the majority because the narrative surrounding events is so focused upon how difficult it is for the able-bodied population to adapt to this new style of living. What about those of us who need to live like this long-term, and are now struggling to access services, but without due recognition.
An interesting phenomenon is taking place. People are discovering what it is like to have their lives and freedom of movement restricted. Being told to stay at home, unable to access the services and lifestyle they previously took for granted, there is a sudden desperate need to find online alternatives to activities that were routine.
As a disabled person, I sit back and watch this, somewhat bemused. It turns out that my usual way of living is known as ‘self-isolating’! For the last couple of months, unrelated to COVID-19, I’ve only been leaving the flat once per week. Those instances have often been because I’ve ‘forced’ myself to do so, knowing its not good for me to be cooped up home alone all the time.
Technical and online solutions are now being found for exercise classes, book groups, choirs, there are more virtual tours of museums and galleries. These things were difficult (or impossible) to find prior to social isolation rules.
However, the need for them has always existed for some of us. The prospect of trying to join a Pilates class appeals. It would be good for me physically and mentally. However, I’ve been held back by a few issues, such as cost, access and changeable function abilities. I recognise that I may be able to do a few minutes but then need to rest a lot. I need to be able to get to a chair to do so. I may not be able to function well afterwards, least of all drive home safely. Yes, DVDs and YouTube videos exist but these require more personal motivation and lack the camaraderie during difficult exercises.
People who have difficulties leaving home for various mental and physical health reasons, or caring responsibilities, are now provided with many more opportunities.
For us, the world is opening up. While others complain of being ‘stuck’ at home, I begin to wonder if people will start to understand a little more of our everyday experiences. I don’t know how long empathy for this way of living will last, or whether alternative formats of activities will continue when the crisis has eased. I hope that employers will be more open to employing people who need to work from home as their usual way of working, now that they are being forced to experience how feasible this is for many of them.
It’s awful that its taken a situation such as COVID-19 to bring about these changes. Hopefully a positive to come out of these horrendous events will be the creation of long-standing new opportunities for those of us who will continue to live in a self-isolating fashion long after the restrictions have been lifted.
My mum and I saw an advert for the programme ‘GP’s behind closed doors’ in the summer of 2018. Together we laughed, ‘we know what goes on behind closed doors!’
Although I was aware of the programme for a long time before then, I had never watched it. We decided to watch a little. It wasn’t the behind the scenes of GP practices we had been expecting (and are so familiar with hearing about from my Step-Dad). Instead, it was the consultations. We are equally familiar with those of course.
Fast-forward to this week. As I exit an appointment with a new (to me) GP I find myself wondering how different the experience would be had it been filmed for a TV programme. Instead of the brusque apparent-efficiency at the expense of my self-esteem, I may have experienced an appointment with genuine efficiency, person-centered care and empathy.
This links a little to Goffman’s theory of front stage and back stage. What we present to the world when we are ‘on stage’ and performing in that particular social role, compared to being back stage and able to relax or step out of that character. If there was a camera present, would the GP’s on-stage persona have become more caring and sympathetic for the audience’s benefit.
I don’t know. What I do know is that I’m tired of being shunted about as a heart-sink patient whose knowledge and understanding of her own condition, and the system itself, is treated with skepticism and disdain. And that is only when the time has been taken to find out what my knowledge and understanding is.
Dr knows best. Dr will tell you what you do and don’t need. Dr will tell you they do not have the time (or inclination, it often seems) to talk to you as a human being. If you dare to try to say more than three words about your symptoms you will be cut off and told ‘bullet points only’.
Dr does not always know best. Certainly not when it comes to person-centered care. Where is the ‘person’ and where is the ‘care’? Sadly in these times of over-stretched general practice the inclination to try to achieve empathy and respectful interaction is sadly lacking.
I found myself falling into the trap of trying to be the ‘good’ obedient passive patient. Eager to appease the person who holds the power to grant me my wish. My wish was for an ounce of humanity. I was granted my repeat prescription. The other three things I need to seek help for will have to wait for another three openings in appointments. The ounce of humanity will hopefully not prove too elusive in future but I might need a magic wand for that one.
Resilience is something of a trendy concept at present – seen as something we must all develop to get us through the days. A friend questions the validity of the term when it is being pushed by organisations on to staff – it shifts the onus from them to look after their staff on to the individuals to cope with what is thrown at them.
While it is important for us to have personal coping mechanisms, there’s a reason that loneliness is a significant social concern – our personal coping abilities only go so far. Resilience requires building blocks and support from others in its development and restoration when shaken.
I had a particularly bad depressive episode earlier this year and continue to struggle to maintain functioning mental health at this time. Someone asked me how I got (get) through it. My answer was, ‘Me’. I got me through it. I don’t know how.
The isolation I experience, and self-reliance I am dependent upon, ebb at times. However, the last 8 years have not only taught me who I can turn to for support, who understands me and loves me unconditionally, I have also learnt that I achieve more by being on my own. I have no option but to make that cup of tea myself if I want it. I cannot sit by and rely on someone else to help me in the house. I do not live an active life and the loneliness is sometimes stifling; because all energy I have is spent on getting through the days, the best way I can. I live within my limits. I frequently live beyond my body’s limits and suffer for it. However, I’m still going. Because of me.
This is the reality of living with chronic pain, fatigue and depression when you are single and friends and family are not near-by. The toll on my body of having to manage alone is increasing. However, I am able to look at what I manage to do and feel proud. I also feel the impact that such managing has on my body and I see what is lacking in my life – it is considerable.
No matter the love and kindness from some (but certainly not all) friends and family, when it comes to it, it is only me I can rely upon. Chronic pain is described as isolating because people lose the social contact they used to have and feel that no one understands their experiences. Having been a child and adolescent with pain, and now an adult with it, I have the benefit of being somewhat accustomed to this isolation. What worries me is how long I will continue to cope with such isolation and self-reliance. As I’ve said before, my resilience is waning.