Stories of symptoms and symptoms of stories

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Stories of symptoms and symptoms of stories

Lucy O'Hagan photo

Lucy O'Hagan

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Symptoms of stories pic_Lucy O'Hagan

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Lucy O’Hagan knows symptoms can tell a story and sometimes the story is hard to hear

In general practice we see many people who have “symptoms without pathology” and they chal­lenge us. We say these patients have somatisation, medically unexplained symptoms, functional disorders or neurophysiological syndromes, but in many ways they are normal respons­es to living in our bodies.

They must be normal because I get a lot of symptoms like this! So, I will use examples from my own life/body.

My suggestion is that we view these pathologically unexplained bodily responses as either story of symptoms or symptoms of story or often both together.

Here’s a story of symptoms.

Pain in the neck
This morning I have neck pain, I’ve had it before, it tends to go away and there are no red flags. My neck pain is probably “phone neck” or hours sitting at a bad workstation causing things to get a bit tight, but some­thing else happens when I start to notice even a little tension in my neck.

I tell myself a story of symptom.

The story often starts unconsciously before I even have pain and goes like this, “Oh no I’m getting that neck pain again, I hope it doesn’t get really bad, maybe the episodes are getting closer together and maybe my neck is just stuffed and I will end up with chronic, unrelenting neck pain.”

This story is not irrational but definitely future fear-related and the story makes me focus my attention on the tightness and next minute I have pain. I have no doubt the pain I now have is caused or at least amplified by the story I have just told myself.

Often it is not so much the symptom that needs treating but the story of symptom needs to be spoken and changed.

I can do this myself when I feel the neck tightness. I can tell myself that it will go away as it has before, if I just breathe and relax my neck, stretch, and watch my phone and laptop posture. I can speak nicely to my neck, reassure it, send it for a nice rub, give it a warm wheat bag and maybe take a couple of paracetamol, because I know if I let the pain carry on that will encourage my negative story.

What I am doing is telling myself I have some control of the future story of my neck pain and it doesn’t have to be bad. It’s gone in a day.

If I wasn’t a doctor/patient I might have taken my neck pain to my GP and I would need my GP to help me by retelling my future neck story. I would want the GP to give me a placebo story with absolute reassur­ance that I am unlikely to end up with horrendous, chronic neck pain, and because I trust my GP’s wisdom and experience, I will believe the placebo story, and that will have a profound effect on my symptom.

The problem is that it is hard for doctors to do this.

We worry we might miss a terrible diagnosis so we always give ourselves an out such as, “Oh, but do come back when and if it gets worse and we will do some investigations,” at which point I would start to worry again and the placebo story loses its potency. What I need to hear is, “In my experience, most people with pain like this manage it really well as you are and don’t end up in terrible pain. Tell me about the things that help already and what else you think could help?”

Sometimes, GPs find it hard to reassure people because we have clinical bias, in that we tend to see the people with neck pain who do badly and have to keep coming back to the GP, so our bias is towards a negative story rather than a positive one.

Also, we like to offer the solutions because we are the doctors, but our solutions are often limited by our desire to be evidence based. So, my GP might offer more analgesia or another round of physio, but what I need is my GP to cheerlead me into harnessing my capacity to change the story. Most people with a symptom are already doing things that help and their solutions will often be better than ours.

My neck pain is also complicated by the fact it is not just a story of symptom but a symptom of story. By this I mean there is often something in my life story giving me a pain in the neck.

Luckily, I have found a qi gong master who specialises in stressful stories stuck in bodies. He always asks, and usually if I speak that story and can do something about it, the pain settles.

Sometimes the story giving us symptoms isn’t easy to resolve, for example, if we are in a bad relation­ship but we feel we can’t leave, if we are being treated badly at work but have few other work options. Our powerlessness over the story can prolong the symptom in the body.

If I use the example of my burnout, my symptom was mental and physical exhaustion, and the story was one of deteriorating relationships and relentless work pressures, creating a feeling of being overwhelmed and ultimately shut down of my mind.

I didn’t feel able to change the story of my situation, so the bodily symptom became worse and worse until I had to give up work.

So, I can think about my burnout as a symptom of story, and it was not until I changed the story by changing my situation that I was able to recover.

But my burnout was also a story of symptom because the story I told myself about the symptom was terrible. It rolled like this, “I have some awful thing that will not go away, I probably caused it myself, I am so ashamed to have this because I should have been able to cope, I may never be the same again.”

These negative stories of symptom can be called nocebo stories in that they can amplify and prolong symptoms.

What I needed was a different story of symptom.

I searched for another story by reading about people who had recovered from burnout, so I sensed I was not alone and could recover. Luckily, I had a marvellous GP who told me a relentlessly positive placebo story and harnessed my capacity to recover. (She may well have had some doubts about my prognosis, but she never said and I didn’t need to know!)

So, my burnout can be seen as a symptom of story exacerbated by story of symptom.

There are many more examples of symptoms of story.

Hard to swallow

I once had a strange symptom of not being able to swallow pills and feeling they were stuck above my soft palate. I did go to an ENT surgeon although I knew what my problem was; there were things going on in my life that were hard to swallow.

Occasionally I have had a gnawing dyspepsia in response to a story that is not mine but has a sickening quality as if I can’t stomach it, for example, hearing about COVID deaths or the mosque shooting. If I did not make the link between the story and my symptom, I might have ended up at my GP getting omepra­zole and a gastroscopy.

Symptom of story gets very difficult when the story is very hard to speak. For example, someone who has been sexually abused may present with pelvic pain or numerous bodily symptoms, but the story of abuse is so hard to speak and make peace with that the symptoms persist for a long time. We know that the symptom usually disappears when the treatment is directed at the story rather than the symptom.

A physical symptom can be a manifestation of someone else’s story. My heart can ache when someone close to me is suffering. I can feel drained and fatigued when the patient in front of me is them­selves overwhelmed by their story. Again, I need to treat the story, not the other person’s story so much as “my story about their story”.

If I can see the possibilities and hope and the strengths in the other person, I harness their capacity to change their story and my physical symptom settles. If I see their story as hopeless, my bodily response to them will persist.

I met a young Māori woman with terrible recurring gut trouble who said she was the one who expressed in her body the problems in her whānau. Not surprisingly, extensive investigations have foundno pathology.

We can now better understand things like mate Māori, a physical illness caused by transgressions of tapu or mākutu. These are symptoms of a collective cultural and spiritual story.

We have heard of “pointing the bone” resulting in the death of a well person, or visits from ancestors or witchcraft leading to severe sickness. These are culturally embedded, nocebo stories that create “bad” outcomes, unless the cultural story is healed.

But doctors can also frequently deliver nocebo stories. My sister, when in her 20s, was told by a psychiatrist that because of her bipolar disorder she should not have children and would never be able to work.

Luckily, she didn’t believe him.

No pathology

We usually know in the first consulta­tion that certain symptoms’ patterns are likely to end up in the “symptom without pathology” category. We also know that often these patients wait 12 to 18 months for specialists and investigations to rule out medical diagnoses. By this time, the “worrying about something serious” story of symptom will have fully embedded the symptom and make it really hard to get rid of.

We need to do investigations, but if we think there is an 80 per cent chance we won’t find anything, we need to talk up that 80 per cent and tell a placebo story in the first consultation, not a nocebo one, for example, “People get strange symptoms like this and mostly they go away, we will send you to a specialist but most likely the symptom will have settled well before then, it’s unlikely they will find anything serious, which is good news because you don’t want a diagnosis from a neurologist! In the meantime, try not to monitor or focus on the symptoms and, if anything, notice when it is not there.”

In that first consultation, if we could search for story of symptom and symptom of story, we might have a chance of really helping.

Lucy O’Hagan is a GP living on the Kapiti Coast