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.
‘Friends’, partners, colleagues… I’ve encountered my share of abusive people. Some of whom I would go so far as to describe as being of a narcissistic personality type.
Then there is chronic pain.
Like narcissists, my pain is selfish, impulsive, controlling, manipulative. It must be heard and acknowledged. If I ignore it I do so at my own risk.
It consumes my thoughts, even my dreams sometimes. It undermines my confidence, makes me question my own memories and sanity, controls my social life, restricts my activities. I question my abilities and my potential; feel a failure when I cannot achieve something ‘normal’. I lose friends and potential partners. But worst of all, there are times when I lose sight of myself.
Chronic pain can be a pervasive consuming unrelenting force and the ultimate abusive partner.
I am often struck by declarations that people are not defined by their condition, as though it is an entirely negative thing for it to be part of their identity. My view is a little different.
It’s possible that growing up not knowing any different than bad hips and pain etc plays a part. I have no clear before and after identity.
Being rejected because of the pain I experience and the limitations this places upon my life (and those around me) has made me consider how much of me is rejected in the process. Of course, it is possible to say that someone should see ‘beyond’ my pain and disability. However it is that pain and disability that has shaped the person I am today, for better or worse. It will continue to shape the person I will become also.
It is one part of my identity and it frames my interactions with the world. This is not to say that my identity is defined by it or that I am my pain. Rather it is to say that if you reject my pain, you reject the person I am because of it.
I’ve written before about the need for those around us to accept that our pain is chronic (My pain is persistent – can you accept that?). Yesterday I attended an event at UCL’s Institute of Advanced Studies (Chronic Pain in the UK Today: Medical, Academic, and Political Perspectives) which made me think further on this topic.
Discussions included the need to accept that pain is part of someone’s life and that’s OK. It’s normal for some of us.
Frequently we are recipients of unsolicited advice and suggestions to improve our health, reduce pain and such like. There is an instinctive need to ‘cure’ pain and illness, even when it does not affect our own lives. Those of us on the receiving end, aware that there is no magic wand with an incantation for pain relief, are left feeling frustrated. We may feel that we have failed by ‘giving up’ on a cure, not trying hard enough, etc. because we do not conform with the social expectations of healthy or ‘normal’.
As I wrestle in my personal life with how much I should show the impact of my pain and fatigue on my day-to-day living, I am reminded not to feel a need to apologise that this is my life – either to myself or others. It’s not fun; it’s difficult, frustrating and overwhelming at times. However, it’s my pain, my normal, and that’s OK.
Recently I was asked if I am able to drive. The response I gave was a simple ‘yes’. However, this omitted a large amount about my difficulties driving which got me thinking about the unspoken realities of life as a disabled person.
By its nature chronic pain is invisible and idiosyncratic; likewise are the implications for living with the condition. As with most impairments, the full impact on someone’s life is rarely appreciated by those outside of a close circle (equally those people often struggle to understand something like persistent pain, see Exhibiting Pain).
Common feelings regarding living with persistent pain include that other people don’t understand or believe you and that they don’t want to hear about it. This leaves a great sense of invalidation and frustration for the person concerned. However, there is a feeling that if you try to explain the intricacies, or ‘fine print’, of the condition, people will switch off or aren’t interested. Where does this leave us with trying to answer a question appropriately as well as accurately. I took the approach of simply answering ‘yes’ to the query about my ability to drive. However I was frustrated by this and at myself for not knowing how to answer it. Is it better to ‘deny’ the difficulties I experience to give a more socially acceptable and ‘easy’ response or should I make some attempt to answer more accurately.
The reality is that I struggle with driving for a large array of reasons, linked to different pains and symptoms in various parts of my body. I am also dependent upon my ability to drive for independence and to be able to leave the house, making this a sensitive issue.
Again, the difficulty of explaining the idiosyncratic and variable nature of these symptoms, together with the emotional and physical importance of being able to drive, puts me off trying to provide a full answer. Yet this leaves the inevitable problem of feeling that others don’t understand what it’s like to live with persistent pain and the various ways it can affect your life. Sometimes it would be nice to hand out a card or something that had ‘yes’ on one side and the ‘fine print’ on the reverse, detailing the unspoken realities that go alongside.
I’ve written before about the little things in life that I would do, or do differently, if it weren’t for the way that my pain condition affects me. Yesterday the phrase came to mind again as I dealt with a change that has occurred through the arrival of new neighbours.
The change of neighbour has led to a difference of habit regarding parking of cars. The upshot is that their car blocks access to mine and my immediate neighbours’ back gates, which is the way in which we tend to access our properties. While this is annoying and inconvenient because our bins can’t be moved in and out of our gardens, it has created an additional problem for me. It meant that I had to try to edge along beside their car to get in to my home. With my pain and mobility difficulties this is extraordinarily difficult. It also prevented me from being able to use my rollator or wheelchair between car and property. The alternative is to park in the road to the front but there is no rail by the front door, as there is by the back and it is more difficult to negotiate other things also.
Am I being unreasonable when I feel that it is inconsiderate of them to make it so difficult to access our properties? Do I need to explain to them my mobility issues and the impact that this seemingly small thing will have on my daily living? My anxiety levels have soared and I’m struggling to find the confidence to speak to them about it. What if they tell me I’m being unreasonable, what do I do then? Such an apparently little thing has a far-reaching effect on my daily living and it is at these times that I struggle most to communicate my needs.
My research examines creativity as a way to give voice to the subjective and invisible experience of living with persistent physical pain. Some artists have used their works to explain their experiences to clinicians (please see a few examples listed below). I have written before of my recent experience with a rheumatologist. Today I received a copy of the letter sent to my GP. It has triggered anger, frustration and tears. Comments are out of context and there are numerous inaccuracies. I don’t feel that my situation is represented accurately at all which raises issues of autonomy for me.
This has led me to think about the authority that this letter will carry in representing my pain and limitations. Patient reported experiences do not carry authority in our records, partly because we don’t enter them. As with any ‘evidence’ or even ‘witness statements’ our voices can be presented in part and out of context. Some elements exaggerated or understated. Or more simply, and less cynically, what the clinician considers worth mentioning, or his misunderstanding of my experience, gets recorded and viewed with authority. What’s to say that his perception of my biggest difficulties are the same as mine?
My perspective is included only by proxy, yet these records are about me. Obviously I understand the numerous reasons why our records take this form. However, I think that there is potential to explore ways for medical records to be more representative of the person they’re for, and about, by adding our voices to them. Meanwhile I need to find a way to have my voice heard.
- Mark Collen’s experience: http://painexhibit.org/en/about/
- Cynthia Yolland: http://painexhibit.org/en/galleries/but-you-look-so-normal/ag06_yolland/
- Carol Levy talks about her experience of participating in the research and the potential for images to help communicate with clinicians: http://www.painnewsnetwork.org/stories/2016/10/17/a-pained-life-show-and-tell?rq=carol%20levy
Last week I had an appointment with a rheumatologist. It became apparent quite quickly that he was working through a scripted process in our interaction. There were instances where questions he asked or examination tests he carried out were not appropriate to my situation. I became increasingly convinced that he was not listening to my responses. Or, if he was listening, he was unable to make a connection between what he was doing and my medical history.
As I left the hospital I was torn between whether to laugh or cry at the way in which he had patronised me. In the end, I did both that evening.
Had the rheumatologist not simply followed a script he may have succeeded in being less patronising, as well as carrying out a person-centred consultation more pertinent to my needs. Is this how so many oversights occur? Is this why those of us with a chronic condition often find that multiple conditions may co-exist but be neglected or over-looked.
It transpires that what I had considered to be idiosyncrasies of my body may actually be symptoms or characteristics of a particular condition. It has probably been overlooked due to the propensity to just shrug shoulders and say ‘oh well its all part of chronic pain, using crutches long-term, etc.’.
I begin to wonder, should I have made more fuss the last couple of decades? Have I been too stoic at times? Too quick to dismiss my own symptoms? How much is due to having medical parents and step-parents (medics generally being far quicker to dismiss vague symptoms)? How much is through the desperate wish to avoid appearing a victim, wanting to avoid tiring people with my difficulties… and so the thought processes go on.
Maybe I should have made more fuss the last decade or two. Maybe it’s all too easy to dismiss the role of self-care in person-centred care when you have a chronic condition characterised by multiple vague symptoms. Perhaps I have been too slow or reluctant to reassess my own script about my health and wellbeing.