In December 2018, I had to undergo emergency surgery due to an inguinal hernia. Lying awake in the hospital ward on the first night after my operation, taking in all that was happening around me, I began to reflect on the deep fear, as well as the horror and confusion that a usually healthy adult may experience on finding themselves in significant to extreme pain. Some of the patients admitted were deeply distressed by what they were experiencing, and struggled to know how best to communicate this to the hospital staff.
At no point in our lives are we taught about pain or how to articulate the distress we experience at suddenly finding ourselves at the mercy of an unknown internal source of agony. When serious pain strikes and persists we can find ourselves dumbfounded by its strength and persistence. How do we communicate to professionals the terror and sheer panic we may be experiencing?
I was deeply impressed by the consistently humane and firm manner of one doctor on the nightshift, who managed to soothe an intensely agitated patient who was clearly in terrible pain. The doctor, while acknowledging the patient’s distress, focused the patient’s mind and resolve on relaxing and keeping calm, while the analgesia took effect. The doctor’s sustained effort provided the patient with support. Lying in agony nearby, I found it helped me too.
According to the World Health Organization (WHO, 2006), health, “…is a state of complete physical, mental, and social wellbeing, and not merely the absence of disease or infirmity,” which means it can be seen as physical, mental, and social. It is a holistic state, encompassing the whole person, and not viewing the person in terms of diseases and symptoms. My physical health is the bedrock of my existence; that on which everything else is built and maintained; including my mental health. There is of course synergy between the two, and I am aware of the importance of seizing all opportunities to use this to my advantage. Without good physical and mental health our ability to function can be badly impaired.
Before the operation, everyone involved was keen to tell me all that might happen during the surgery; the initial incision, further laparoscopy, bowel resection, insertion of drains. I was very thankful to be so prepared and even more so to wake up to just one wound and no drains. Even better, it turned out that during the surgical procedure, once my intestine had been pushed back behind the abdominal wall, blood circulation had resumed at once and all traces of ischemia had vanished. Nor was any mesh required; the abdominal wall was repaired with nylon thread and then the initial incision into the skin of my abdomen closed.
The physical pain persisted post surgery. Thanks to being a habitual runner, my baseline fitness level was fairly high. As I began to negotiate ways of getting on, off and across my hospital bed, I fantasised going for gold in the hospital bed gymnastics. In my mind I was still cat, but running on kitten level strength and capacity.
The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”. As I experienced it, this definition seemed something of an understatement of the actual painful nature of pain.
None of the other analgesics which my GP prescribed even touched the pain. For someone with a long term mental condition, I was well practised in recognising and managing various forms of psychological distress. However sustained physical pain was something new to me; something less amenable to medication or to coping techniques such as distraction and self-soothing. I didn’t know much about pain relief or management (and I still don’t). It was something of an eye-opener to suddenly be at the mercy of so much extreme sensation. I felt completely at the mercy of my new physical condition.
Over the following few months I learned how to negotiate the pain, so that it didn’t limit me as much as it did immediately after my discharge from hospital in January. As the days passed my increasing familiarity with this somatic phenomenon gave me the confidence to challenge it. The GP performed various tests and I was sent to the local drop-in centre for my blood to be sampled and checked. All the results came back as negative. As there didn’t appear to be any indication of pathology I began to think of what I was experiencing as “fake” pain.
Some months on the fake pain was still extant, albeit in a much attenuated form. I am optimistic that I will eventually be pain free. I have resumed running and am determined not to be physically limited in any way.
I feel somewhat disloyal to my mental health peers in admitting this, but for me the experience of suffering intense physical pain has proven to be far more distressing and debilitating than any mental health condition that I have experienced. At times, when the pain was at its worst, there seemed to be no escape from it, whereas even in the darkest phases of my mental illness, for me, there has always been some comfort to be derived from knowing it was essentially all in the mind. The saying “mind over matter” now no longer rings true for me. I need the matter to be sorted to be at peace in my mind.
Sarah Markham is an academic mathematician and patient representative currently pursuing a second PhD in theoretical computer science. She is a member of the BMJ Patient Advisory Panel. Twitter: @DrSMarkham
Competing interests: None declared.