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’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.
GCSE results were released today and I was reminded that it is 20 years since collecting my own.
My memories of school are predominantly negative. I recall being bullied (in part because of my pain and absences), a great sense of isolation and confusion. The isolation was partly linked to the absences and bullying but it was also linked to not knowing how to relate to those my own age. The confusion related to the school work – I constantly felt confused as I was continually on ‘catch-up’.
My education was sporadic, constantly fragmented. The difficulties that this entailed were enhanced because of the context of the particular school I attended. From the age of eight I attended a school with an entrance exam policy. I remember overhearing my mum talking to the headmaster of my infant school about the options if I did not get admitted. I was aware that he wrote a very kind and supportive letter to the school to support my admission. I was acutely aware that my sister was already at the school.
For about 8 years I was convinced that my headmaster’s letter was the reason I’d been accepted. It genuinely didn’t enter my head that I was there, at least in part, through my own abilities. This changed as I approached GCSEs and circumstances led to a friend commenting that she’d been on the reserve list to enter the school. A chink of light presented itself – had I actually been accepted through some ability, not merely pity as I had been so convinced?
There’s a lot I could write about my school experiences and how these relate to my pain. For now, it is sufficient to say that I am finally, after a further 20 years from that moment, able to recognise that perhaps I wasn’t the ‘late developer’ my parents described me as. Or ‘thick’ as I called myself (by comparison to those around me, who mourned an A rather than A* while I delighted in a B or C). That actually I missed substantial amounts of school, every year until about my second year of GCSE (I had two ‘good’ years, GCSE year and first year of A’levels).
One year I missed an entire term. I remember a teacher telling me not to bother sitting the end of year RS exam as I’d ‘fail it anyway’ (I’d been absent, having surgery). Being somewhat stubborn, I sat it and achieved an E. Which was a pass.
Finally, I can see that the absences had a profound effect on my education but that stubbornness (and some element of ability perhaps) is what has got me onto a PhD studentship. No heart-string-pulling letters from a headmaster required.
The old Disability Living Allowance application form used to include a section to complete regarding what you would do if you didn’t have your condition… While this has led in the past …
On occasion, I have been told that I’m brave. It is not through modesty that I have always believed this to be in error. My belief is that an element of choice needs to be involved to be deem…
Last week my GP made an urgent referral for me to be seen by a rheumatologist. I was a little amused by the ‘urgency’ given that the symptoms I’m being referred for have been present for at least 10 years.
So I presently face the prospect of relaying my illness narrative afresh and to a new department, leading me to wonder what I will choose to highlight in my narrative. What aspects will they wish to know, what might be asked of me that isn’t in other departments, for example in orthopaedics or neurology.
I also face the distant prospect of a possible explanation for symptoms that have shaped most of my adult life, but never been thoroughly examined or satisfyingly explained (i wonder if that is an oxymoron in health care anyway!).
As such, I am surprised to find myself reassessing my life with a different diagnostic perspective. I begin to wonder: if I had an explanation 10 years ago, what difference might it have made to decisions made, relationships and work. I wonder whether I would have left a previous position with the sense of failure as I did. I wonder if my marriage would have taken a different course.
By no means do I believe that a possible explanation of symptoms can dramatically change either my life or who I am. However, there is no denying that having information about what you’re dealing with can help you manage it more effectively. It can also help those around us. To lack information is to lack power. That is where so much of our anxiety and frustration comes from when we have unexplained ‘symptoms’ (are they ‘symptoms’ if they are not attributed to a condition?).