The other day someone said to me that managing chronic pain was just the same as managing something like diabetes, hypertension, asthma or any other chronic disease. It irked me at the time and I couldn’t put my finger on just what it was that bothered me, but after a couple of days thinking about it I’ve got a few thoughts to share.
- Chronic pain comes with a whole lot of misinformation that most other illnesses don’t have. Unlike diabetes or emphysema, people with chronic pain have usually spent a long time searching for a diagnosis, and have usually seen multiple health providers all with various names for what the person has, and promising some sort of cure. Even for something as clear-cut as ankylosing spondylitis, it takes around 4 years from initial symptoms to eventual diagnosis and management. This means that most people with chronic pain will have had a long time with hopes raised then dashed with each ‘cure’, lots of time feeling unrecognised and often mislabelled as ‘noncopers’ or perhaps even ‘malingerers’, and plenty of apprehension that every time they move they may be ‘causing more damage’.
- Chronic pain is under-recognised within society anyway. We don’t even have clear data on how many people in our communities have chronic pain, nor how much it costs both our health system and our welfare system. Many treatment providers (and others) think there is no such thing as chronic pain, and suggest the person is instead ‘depressed’ or is seeking attention.
- As a result of both of these, people with chronic pain seek many ways to self medicate. So they may smoke cigarettes, drink alcohol, take medications (either prescribed or over-the-counter), and spend loads of money on ineffective gadgets like magnetic bracelets and massaging cushions and ‘energy treatments’. While the latter may not harm the person, they cost a lot both financially and emotionally, and the former have serious health effects.
- People with chronic pain present with other health problems alongside their pain. Most people with chronic pain have poor sleep. They often meet criteria for depressive disorders, anxiety disorders and can be labelled with personality disorders. As a result of not moving as much as they would, they can be overweight.
- Other aspects of life are affected by chronic pain. Employment, relationships, leisure, general wellbeing, managing the home, caring for children, balancing the budget, communicating effectively. All of these can be affected because chronic pain is invisible, and directly affects function and emotion.
- Managing chronic pain means changing beliefs and behaviours across every part of life. Unlike taking medications, or changing diet, chronic pain management involves self regulating thoughts, changing expectations, adjusting goals, modifying activity patterns, expressing to others why things are being done differently. Constantly reviewing how much energy is available against what needs to be done, because ‘overdoing it’ has such a high physical and emotional cost.
- There are many people suggesting many different ways to manage pain and it’s hard for a person with pain to stick with self management. After all, if someone offered you a treatment to ‘take it all away’, wouldn’t you take it? The resultant emotional rollercoaster ride makes it so much more difficult for someone developing active coping skills for their pain to stay with daily goalsetting, using relaxation, monitoring thoughts, exercising…
- Relapse is normal, flare-ups inevitable and both can happen for no apparent reason. And both of these events can start the whole process of investigation, diagnosis, treatment and more treatment. Or cause the person to doubt that they have the determination to carry on, or that what they’re doing is the ‘right thing to do’.
- Treatment providers respond to distress and may not support a self management approach to chronic pain. During a flare-up, people with chronic pain are often distressed. It’s difficult for treatment providers to resist wanting to help, wanting to ‘take it away’. Helping someone manage their chronic pain is really hard work. It’s tempting to offer yet another treatment, another medication, another investigation ‘just to make sure’. This doesn’t happen in diabetes management, or depression management.
- Services are often fragmented in chronic pain management. Someone with chronic pain can attend a clinic specialising in that body system rather than a specialised centre managing chronic pain. It’s common for someone with fibromyalgia to be seen in a Rheumatology clinic, chronic abdominal pain to be seen in Gastrology, noncardiac chest pain to be seen yet again in Cardiology, temporo-mandibular joint pain to be seen in Dental, pelvic pain to be seen in Gynaecology. Each of these departments will be treating what they consider to be the ‘underlying pathology’, and often don’t recognise that the chronic pain IS the disease, not a symptom of something else.
I’ve only just skimmed some of the reasons that chronic pain management is far more complex to manage than other chronic illnesses – I’m sure you can all think of other reasons. To apply a generic ‘chronic health management’ model to chronic pain without recognising the additional challenges that come with the territory risks once again failing the person with the pain. It risks remedicalising their problem, or managing only the biomedical aspects. It risks labelling the person as being the problem rather than the pain because ‘they didn’t get better’, or ‘they’re never satisfied’.
It also risks demeaning the team that work with the person who has chronic pain. Viewing pain management as simply ‘education’ or ‘exercise’ or ‘CBT’ misses the point entirely. People with chronic pain have a hard enough time getting their heads around their pain, coping with the reality that their pain will not ‘go away’ without having a team that provides only partial management.
In many ways, chronic pain management is the ultimate interdisciplinary team approach – for every aspect of self managing chronic pain, the team need to back each other up and support the person to reconceptualise their part in making what are undeniably difficult changes.
Don’t ever think that chronic pain management is ‘just like managing any other chronic disease’.