With the current pandemic causing uncertainty and confusion around the world, we will continue to keep our followers and supporters updated with any news relevant to people living with pain, their friends, family and healthcare professionals. We will strive to do our best to supply all our resources (magazines, leaflets, podcasts) while we can, assuming it is safe for our staff and volunteers to do so.
Unfortunately, we have had to make the difficult decision to suspend our telephone Helpline support for the immediate future. The Helpline is staffed by volunteers, some of whom have their own health issues. Given the current situation, we are not able to provide the Helpline service in the way that we would wish to.
People seeking support with their pain may continue to use our online community Health Unlocked Forum at healthunlocked.com/painconcern or contact our email help service at help@painconcern.org.uk.
We will strive to reinstate the service as soon as it is safe and viable to do so. But for now, stay safe, stay home, wash your hands and we will still be here on the other side, providing resources, support and advocating for those living with pain.
We at Pain Concern have made the difficult decision to suspend our Helpline support for the immediate future. The Helpline is staffed by volunteers, some of whom have their own health issues. Given the current situation, we are not able to provide the Helpline service in the way that we would wish to.
People seeking support with their pain may continue to use our online community Health Unlocked Forum at healthunlocked.com/painconcern or contact our email help service at help@painconcern.org.uk.
We will strive to reinstate the service as soon as it is safe and viable to do so.
Dead Ink Books, 320pp, £11.99
ISBN: 978-1911585541
Published May 2019
Review by Sarah Edwards
This novel is written from the perspective of Laura, a young woman with endometriosis. It tracks her life backwards from 2016, as a working mother in New York, all the way to 1995, when she was a teenage figure skater living in Norway. We read about Laura developing her identity, trying to fulfill her career and travel ambitions, starting (and ending) romantic relationships, and struggling with the demands of parenthood. The reverse chronology lets us appreciate how much she achieves and how far she has come, layering more insight into her personal history and background as it progresses.
Throughout this narrative of Laura’s life, the pervading thread is her struggle with endometriosis and its impact on her. Descriptions of pain and discomfort, which change over different stages of her life, are constantly interwoven. We read about the sometimes helpful, sometimes confusing, sometimes distressing medical appointments which she endures, and the additional therapies and strategies, which she tries to implement consistently, to help her to manage a ‘normal’ life. We also experience the emotional turmoil that this struggle takes her through. This ranges from from the relief and hope of a diagnosis, to the fear of the pain getting worse, to the distress of an interaction with an unsympathetic healthcare professional, and the anger that she has no choice but to live with this long-term health condition.
The story of Laura opens a window onto the challenges of trying to live a full life whilst also living with the symptoms of endometriosis. It shows us the emotional, physical and cognitive impact of having a long-term pain condition, normalising how much this struggle is present in daily life. We see clearly the struggle which Laura faces in trying to do the ‘average’ things in life, such as having a long-term relationship and working full-time, and how much of a balancing act she has daily to ensure that the pain does not flare to unmanageable levels. We also see the impact that it has on her relationships, whether family, romantic or friends.
At times, the strong descriptions of the all-consuming and debilitating nature of Laura’s pain can make for difficult reading. In its use of frequency to ensure that these descriptions are made clear (and that Laura is listened to), the book can feel a little repetitive. However, this also helps us to understand how inescapable and ever-present the pain is. We are left admiring her strength, determination and emotional resilience. This is a novel which gives real insight into the impact which a long-term pain condition has on all aspects of ‘normal’ life.
Sarah Edwards is a Clinical Psychologist at the University College London Hospitals’ Pain Management Centre, where she helps to deliver self-management support to people with abdomino-pelvic pain. She was also a co-author of Pain Concern’s Sex and Chronic Pain leaflet.
We are going to be performing an evaluation of our magazine, Pain Matters, over the course of the next few months. Evaluation is a key factor in securing funds, not just for future issues of Pain Matters, but to fund all the work we do here at Pain Concern.
If you are a Pain Matters reader – whether you are a person living with pain, a healthcare professional or just have an interest in chronic pain – we would be extremely grateful if you can complete and return the short questionnaire which will be included with the next magazine. Alternatively, you can visit survey.painconcern.org.uk and complete the online version. It should only take about five minutes and your responses will help us to continue producing the variety of resources we produce.
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A peer support network, moderated by Pain Concern, for people with pain to help each other.
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Helpline: Temporarily closed due to Covid-19
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