Guest post by Ellie Hopkins, founder of the Chronically Awesome community for patients with chronic illnesses
Gender bias in medicine isn’t a new topic. Women wait longer for treatment in A&E than men with the same symptoms, and are prescribed less pain relief than men after they have the same surgeries, for example. There’s even an ‘attractiveness’ bias in medicine where senior doctors – who are predominantly straight men – provide less treatment to more ‘attractive’ female patients.
When it comes to chronic pain, studies have also found that women with chronic pain conditions are more likely to be wrongly diagnosed with a mental health condition than men, and are more likely to be prescribed sedatives when they are in pain. While 70% of chronic pain sufferers are women, 80% of chronic pain studies are done with men or male mice.
So when NICE released new guidance on the treatment of chronic primary pain – pain that lasts for at least three months and has no diagnosed cause – at the beginning of August, it caused a bit of a stir amongst the predominantly female chronic pain community.
Should the guidelines come into effect, chronic primary pain would no longer be treated pharmacologically. That is to say, doctors will no longer prescribe painkillers (including paracetamol, opioids like codeine, and more), non-steroidal anti-inflammatories (including ibuprofen, naproxen and diclofenac), gabapentinoids like pregabalin, steroids and steroid injections with or without anaesthetic, and more for chronic primary pain. The list is long and, to anyone who has experienced chronic pain of any sort, scary. (You can find more detail here.)
Instead, NICE is proposing that chronic primary pain sufferers be prescribed up to five hours of acupuncture, a short course of group exercise classes, talking therapies such as CBT and ACT, and antidepressants.
You read right.
NICE has drafted guidelines that propose removing pain medication in the treatment of pain, and instead would offer psychological treatments as a patient’s only long-term options.
In effect, NICE is telling the sufferers of chronic pain for which no clear reason has been found that the pain they are experiencing is in their heads, and thus will be treated as such.
Put another way, until a (most likely female) patient can prove otherwise, the pain will be treated psychologically.
If you’ve read anything about the term ‘hysteria’, you might have read this definition:
“An old-fashioned term for a psychological disorder characterized by conversion of psychological stress into physical symptoms”
In releasing these guidelines, NICE has essentially suggested that chronic pain sufferers are hysterical until they can prove that there is another cause of their pain.
Hysterical until proven otherwise.
Last year I had a hip replacement. Looking back, the period leading up to surgery was easily one of the toughest in my life.
Already five surgeries in, my hip gave me near constant pain and, by the time replacement surgery came, I was desperate and depressed. My life had ground to a halt and my days (and nights) were centred around keeping my pain levels tolerable. Tolerable pain – not pain free.
The thing is, nothing was showing on X-rays and scans. Aside from a little inflammation, my hip looked ‘normal’. No one could explain the source of my pain, so it was informally diagnosed as chronic primary pain while we continued to look for answers.
Fast forward to immediately after my replacement, and my orthopaedic surgeon did a little dance at the end of my bed – a celebration of just how bad my hip had been when they opened me up. Thanks to my hypermobile EDS, there was no cartilage around part of my hip and the bones had rubbed against each other until they had worn deep grooves.
No amount of acupuncture, exercise, antidepressants or talking therapy would have made it better. In fact, the longer we left it, the worse it had and would have continued to get.
Those months before surgery have left deep psychological scars, even with the antidepressants, but these proposed guidelines make me feel lucky.
Had these guidelines been in effect, I would have been treated differently. Instead of those painkillers that made my pain tolerable, I would have been offered acupuncture (which wouldn’t have helped) and exercise (which would have made it worse) in the short term. Long term, the options would have been antidepressants and talking.
The idea that this would have been – could have been my experience – makes me fearful, sad and angry. Because it wasn’t just the painkillers that got me through. It was knowing that I had doctors on my side who believed me, who made me feel valid in what I was experiencing, even though we didn’t have a definitive understanding of what was happening.
In fact, when I approached my GP about antidepressants, we talked through the idea of CBT and agreed that for chronic pain, sitting and talking about it was unlikely to make me feel better.
None of my doctors told me my pain was psychological, or even hinted at it. They knew that it was physical even though they didn’t have the answers, and they fought to make me better.
This is why these NICE guidelines are so dangerous.
Not only do these guidelines make sufferers feel invalidated, it makes them feel like no-one is on their side, fighting to make their lives better.
Living with chronic pain is a battle, one that wears you down over time. To make progress you have to become an expert in your body, your illness and the medical specialisms you fall under. You have to learn to become an advocate for yourself, able to stand up to a medical professional, able to fight for the treatment you want.
It’s hard. It’s even harder – nearly impossible – if you feel like no one is on your side, fighting your corner, helping you navigate treatment pathways and decisions that could impact the rest of your life.
Late last year we at Chronically Awesome did some research around how chronic illness affects people’s lives. Almost 700 people took part, and some startling figures came out of that, including:
- 43% of respondents have not sought help for mental, emotional and/or psychological difficulties for fear of having physical symptoms wrongly labelled as psychological.
- 39% said they have been misdiagnosed as having depression and/or anxiety.
- 41% said they have experienced symptoms of post-traumatic stress disorder (PTSD) as a result of their illness and/or treatment.
These figures and countless other studies show that even now, even without the NICE proposals, our medical system has yet to treat women the same as men – let alone make female patients feel safe, listened to and validated. We are stuck in a system where women feel like they cannot advocate for themselves, cannot dissent, cannot be heard, cannot even access the same quality of care as their male counterparts.
While the consultation period for the guidelines is now over, we can only wait and hope that NICE and the NHS don’t take a further step backwards in how they treat pain and how they treat women.