Kathryn Body is the Haemophilia and Bleeding Disorders Counsellor, Haemophilia Foundation ACT
Managing chronic pain is complex and is an issue that many of my clients with bleeding disorders deal with daily. I was interested to review the experiences of one of my clients with an acquired bleeding disorder, to provide an example of the individual challenges that each person faces and the range of strategies that made a difference for my client.
David (not his real name) is a young man in his early twenties who was referred to me for counselling by his family 6 months after a bleeding disorder with associated vasculitis, for assistance with managing ongoing chronic pain and associated depressive symptoms.
David’s bleeding condition is usually an acquired childhood disorder, and when it occurs in an adult the pain symptoms are known to be severe. David’s medical care had been essentially symptom management with steroids and analgesics. His condition was expected to spontaneously resolve in a matter of weeks although there are cases where it has continued unresolved for months.
Until this medical issue David had an unremarkable health history, with robust physical and mental health. He had just completed a degree and was enthusiastic about his future employment plans.
David and his family became very concerned for his future when his pain levels remained high and showed no sign of decreasing in the months after the medical incident.
Counselling contact was made fortnightly, usually over a coffee in a café or a gentle walk for an hour. We talked about the difference between acute pain, chronic pain and its management and the need to educate about what could be happening in David’s brain.
David and his family began reading about more recent approaches to pain, such as the research by Lorimer Moseley, David Butler and their colleagues that many of you will be familiar with.(1,2) Moseley, for example, describes how when pain persists after an injury, the system in our body that detects and transmits ‘danger’ messages becomes more sensitive, and sends danger messages to the brain at a rate that overestimates the true danger level. And then because the pain is (wrongly) interpreted by our body to be a measure of tissue damage, our brain presumes that the tissues are becoming more damaged. So when pain persists, we automatically assume we have persisting tissue damage.(1,2)
These are novel concepts for most of us and the researchers have put together diagrams and artwork to explain them. David commented that he really liked the cartoon-like presentations and the ‘almost irreverent’ way that pain was explained. The cartoons cut through a lot of words and made immediate sense to him about what he was personally experiencing.
David, his parents and some friends all ended up reading the literature about the pain research and found it really assisted their understanding about what was going on with him. They used it to educate each other and to check out what could be happening to David when he had a severe pain bout.
David was referred to a private Pain Management Clinic and after waiting a couple of months, attended a Pain Management Clinic and was a participant in a Pain Management course for a number of hours each week for 5 weeks. This clinic followed the pain approach that David and his family had been researching.
The principles in this approach are outlined by Lorimer Moseley as:
There’s compelling evidence that reconceptualising pain according to its underlying biology is a good thing to do…
12 months after referral David still experiences some pain from his condition. He is optimistic about his future and has commenced further study and has started a part-time job. When we talked about his experiences, he commented that he wouldn’t want a repeat of the last 18 months, but said he has ‘learnt a lot’. He now has a greater understanding about his condition, about his overall health and how to manage his condition. He has learnt about pacing himself and recognising when his body starts to catastrophise his condition and what to do about it. He no longer ‘looks for the magic bullet’ but values all the resources he has been able to access.
This has also had a good outcome for David’s parents: they explained they feel more in control and are grateful for all the progress their son has made in managing his condition.
From my perspective as a counsellor, this was an interesting journey, given the unique nature of any individual’s pain experience. I could see that the literature, courses, learned techniques and counselling support and empowering of the client all contributed to an improved state for David and confidence in his future health.
Thanks to David and his family for their permission to share their story.
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