Following on from our earlier blog exploring the difficulties in managing and treating Chronic Pain, we sat down with one of our behavioural scientists who has lived with the condition for over a decade.

Rhiannon (Director of Behavioural Science) shares her story of grieving the life she once lived before an unfortunate incident that left her with permanent nerve damage. She tells us her story of constant dismissal by countless healthcare professionals (HCPs) before eventually being understood and supported to accept her life with Chronic Pain.

Rhiannon’s Story
Rhiannon’s journey begins with the perfect storm – nay, typhoon – of orthopaedic injury. Living a more active lifestyle than most, Rhiannon broke her ankle on a coastal run in 2012. And then, just 9 months later, she broke her ankle again after coming off her road bike at speed.

After coming off her road bike, the second practice was missed- potentially due to HCPs mistaking it for the previous break 9 months prior. As a result, Rhiannon was signed off to go about her life as normal.

3 weeks after the second break, Rhiannon attended an MRI scan which was (luckily!) already scheduled as a follow up to her first break. Following the scan, Rhiannon chased for her results to no avail and then she eventually spoke directly to a medical secretary, who discovered that a clerical mistake had led to her being discharged in error.

At this point, the scans from 4 weeks ago were unearthed and confirmed that she had indeed been walking around on a broken ankle for 7 weeks. For Rhiannan, this now meant she needed a new cast and months of physiotherapy and rehabilitation before the extent of any additional damage from walking on it for so long could be accurately assessed. Months later, a new MRI scan confirmed the ankle had not healed correctly and she now needed surgery and a screw to repair it. Due to long waiting lists, it was almost a year to the day after her accident before she finally had surgery – something she believed would fix her ankle for good and resolve the constant pain she’d been in for the past year.

However, months on from surgery, Rhiannon’s pain was worse than ever.

“From being fiercely independent and athletic my entire life to not being able to carry a cup of tea from the kitchen to the living room, much less carry shopping home from the supermarket. I was lost to myself.”

The hunt for an answer
For the next 4 years, Rhiannon sought ceaselessly for medical advice for her pain but was dismissed to no end. Specialists, consultants, and physiotherapists alike seemed uninterested in her experience, disregarding her as hysterical and attention-seeking.

The primary medical advice was to take over-the-counter medication such as paracetamol and ibuprofen which did nothing to relieve her pain. So, the very real discomfort, at times agony, that she was experiencing was left untreated for years, which had a devastating effect on both her body from compensating, her lifestyle and her mental health.

“They may not have had any answer for the biological cause, what was happening or why… But the pain itself, the loss of my lifestyle and hobbies, the loss of my identity, my general psychological well-being, even just listening to my experience of trying to adapt to living with the constant pain. I was in a really dark place for such a long time, and none of the people supposed to be charged with my well-being appeared to even notice that side of things, much less care. And that is something they could have helped with.”

The doctor who finally listened
After 5 years from the original incident, Rhiannon moved to London where she met a physiotherapist who recognised signs of neuropathic pain from the untreated fracture, and nerve damage from the subsequent operation. The physiotherapist referred her on to a specialist consultant who agreed with this provisional diagnosis – only after this appointment did Rhiannon feel ‘heard’ and had some initial answers to her longstanding questions.

Another surgery confirmed that the nerves in her injured foot had indeed been damaged and entangled in scar tissue from the initial operation, creating additional pain from a permanently trapped and damaged nerve. They were able to free most of it, which meant that, combined with prescribed pain relief (pregabalin, amitriptyline, lidocaine plasters), in time Rhiannon was able to walk unaided again.

While the pain was now manageable, Rhiannon was still unable to go back to the running, gymnastics, dancing, and other endurance sports that she enjoyed – the pain was now classified as chronic and Rhiannon was referred her to a specialist pain clinic to try and find a solution.

She continued having follow-ups with the pain specialist, who listened to her entire experience and explored options thoroughly with her. However, this specialist also prepared Rhiannon for the reality that Chronic Pain is not currently a curable condition.

“I felt truly heard and my experience cared for, and I think that was critical to me being able to accept I’d reached a point where this was now my reality, there were no answers to be had.”

Accepting a Life with Chronic Pain
With the support of specialists who respected and acknowledged her experience, Rhiannon was able to focus on the part of her condition that she could control: the way she felt about it.

She enrolled in a Pain Management Programme (PMP), which helps sufferers to mourn and let go of the life they had imagined for themselves before their diagnosis, and reframe their beliefs and feelings about their future.

“This isn’t a dismissal – it’s about helping you reimagine your life and while it’s not what you always dreamed, it can still have those things in it, you just have to be open to reframing how you achieve it.”

The PMP helped Rhiannon to focus on things she was still able to achieve, while being realistic about the compromises she would have to make living with Chronic Pain. While she had to let go of her dreams of backpacking around the world, she has since embarked on many adventures within her capabilities – just a couple of months ago she had the incredible opportunity to go swimming with wild dolphins on her travels. But she would never have been able to reframe her beliefs about her future in this way without the support from the specialists that finally treated her as a patient with a life to live, instead of an irksome illness that couldn’t be cured.

Concluding Remarks
While Rhiannon lives a bountiful life now, she endured a decade of practically untreated pain, not to mention the psychological isolation and feeling unheard by HCPs. Although Rhiannon is now living with Chronic Pain, there are many sufferers who never find the solace that she found, and never reap the psychological benefits of PMPs or other psychosocial therapies aimed at pain management.

On the pharmaceutical side, while there are many existing therapies which target neuropathic pain and nerve damage, these drugs cause grogginess, impair memory formation and retrieval, and may be toxic in the long-term. More clinical research is required to develop pain-relieving drugs which don’t have as much as an impact on patients’ already compromised quality of life.

When conducting patient research, we need to consider how side effects the patients experience impact methodology design, making sure we provide sufficient breaks, clear question construction and flexible moderation. It’s also important to consider that the relationship patients have with their condition is unique and highly influenced by the support they are given by healthcare professionals, beyond simply diagnosing and treating the condition.
In stigmatised and highly impactful conditions such as Chronic Pain, the HCP-patient relationship is crucial in protecting the patient’s long-term wellbeing. Even if there is no way to cure a patient’s condition, HCPs must recognise that they can provide support to alleviate some of the impact that a condition has on patients beyond just the physical symptoms.

“If you treat the illness or condition, you either succeed or fail. But if you treat the patient, that’s a different scenario altogether, and that was the breakthrough I found.”

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