What is hope? The dictionary definition of hope is ‘a feeling of desire for a certain thing to happen.’ What does that mean to a person with chronic headache? It is neither the expectation or wish that their pain will ease or end. Rather it is allowing for the possibility that what is desired may or may not occur. When things are going better, hopes are raised; when things are worse than usual, hopes are decreased. When a new treatment is proposed to decrease pain, hopes are raised. When that treatment does not really help, hopes are dashed. Hope runs on a continuum of ebb and flow, up and down, at times despair or its opposite, delusion. Our role as providers to those suffering with chronic headache is to be honest- to keep our families/patients from despair, but also from delusion. To embrace the reality, but to continue to work towards a better outcome.
It is difficult to deal with patients and families day after day on either end of the spectrum. You don’t want them sinking into despair but also not looking for the magic answer that will take away all pain and suffering. Neither way of thinking or feeling is helpful, and can really have an impact on the therapeutic relationship.
I have many pediatric patients with intractable headache- chronic migraine, chronic tension-type headache and new daily persistent headache. It is hard to keep these families from despair, as they think they or their child will never have relief of pain. As providers, we can help these folks keep their hopes up but in a realistic way.
When asking about their headache pain, I will say: are you still having all day every day headache? Have you noticed any headache-free time yet? I find that adding ‘yet’ shows them that indeed I do think that headache-free time is possible for them. I tell them I have absolutely seen patients just like them achieve time free from headache- starting with just 5 minutes. I often get the answer, ‘no not yet’; but by asking that way, it means that I, their provider, believe it can happen. This is an incredibly powerful message. There is nothing worse that hearing from your provider that there is nothing they can do for you- and so many of these families tell me that they have heard this message.
Unfortunately, hearing the ‘nothing we can do’ message, can work in the opposite way. It can drive families to look all over the internet looking for the instant or unorthodox cure or reason for their child’s suffering. That can lead to these folks to being preyed on by disreputable people, feeding into the delusional thinking. And costing thousands of dollars, with nothing to show for it. That type of magical thinking also delays acceptance of the way things are, interfering with the multidisciplinary rehabilitative approach to care that is most likely to succeed.
Pediatric pain rehabilitative programs work when families reach acceptance of what is happening now, and work towards return to function- not the magic cure. It is always hard work for everyone. Your belief that your patient can have a functional life, learning to cope with pain, can help keep them from despair. You give them hope but not false promises, to avoid delusions, and to foster their recovery. It is so important to maintain the balance between despair and delusion, also incredibly hard. Communicating that message is crucial to helping our kids grow and thrive.
