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the psychologist's role in chronic disease is both patient- and specialist-centred
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living with a chronic disease is tough. you have to monitor your symptoms, meet with your health-care team regularly to make sure your medications are working as they should and navigate life outside your health in a different way.
much of the focus on chronic disease remains purely in physiology and what’s going on with the body physically. but a significant part of living with a chronic disease is how it affects a person mentally. because at the end of the day, “nobody wants to be sick.”
“when you have a disease, it’s going to be seen as a burden,” said dr. michael vallis, a health psychologist specializing in chronic disease. “with an acute disease, you can almost deal with it and it comes and you experience it and then it goes and then you move on. so, even if you look at something as challenging as grief, there is sort of a recovery but from this, with a chronic disease, those issues never really go away.”
the mental aspect of chronic disease is such a crucial area to pay attention to simply because of how the brain works: when it senses a threat, there’s distress, there’s anxiety and there’s even loss.
and that’s exactly what chronic disease is: a threat to someone’s health and overall quality of life.
the difference between psychopathology and disease-based distress
mental health conditions such as anxiety and depression can exist on their own, and many people living with chronic disease may also develop depression or anxiety. that said, the two are more like two sides of the same coin rather than the exact same diagnosis.
for example, a person can have depression without a chronic disease, but when you throw chronic disease into the mix, depression isn’t necessarily another diagnosis, but rather an extension of the grief, loss and distress they’re experiencing.
“a really good question to ask a person would be, if you didn’t have this disease, do you think you would be having this experience?” said dr. vallis. “in my opinion, patients are very good at differentiating that, saying, ‘no … i’ve struggled with depression my whole life. you know this is just another brick in the wall for me.’”
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dr. vallis gives the example of someone living with inflammatory bowel disease. they have to deal with the symptoms of the disease, but there are also other anxiety-inducing situations in which they are constantly trying to navigate, such as where they can use the washroom.
“the last thing you want is to go to a dirty washroom in a busy mall with 20 stalls lined up, and you have diarrhea,” he said. “they kind of navigate the world with where are the safe things? they will tell you, ‘i can go to this mall because it’s got clean, private bathrooms.’”
this is just one example of the mental impact that people living with chronic disease have to contend with, and that mental load on top of their chronic disease should be normalized.
working in disease-based distress versus mental health
dr. vallis works with people living with chronic disease. while both are similar in the sense that they end up at the same result, they require different approaches.
“the issues i study are the psychology really of the disease, as opposed to, let’s say, colleagues of mine who would work in an … anxiety disorder clinic or that have a psychotherapy service,” he said. “they might be working with people who have more of those kind of mental health-related type of issues and the two come together because it’s very common for people to fall into an actually mental health diagnosis.”
for example, mood disorders in canada have a prevalence of around 6 per cent, whereas people living with chronic diseases have a mental health disorder prevalence of between 12 and 15 per cent, according to dr. vallis. when it comes to diabetes, that number is almost 50 per cent.
but when patients of chronic diseases aren’t given well-rounded care, such as bringing the psychological perspective into the medical approach, they can end up feeling shafted when they are sent somewhere to address disease distress.
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“someone would see a person, they’re struggling. they refer them to the mental health team. they’d go see the mental health team. the patient would come back to the clinic and say, ‘don’t ever do that again. i had nothing in common with those people. they weren’t interested in my condition because it was specific to the disease, and they basically told me, i don’t have major depressive disorder. i don’t have bipolar disorder. i don’t have a schizoaffective disorder. there’s nothing wrong with me psychiatrically.’”
dr. vallis sees this regularly with patients he treats for diabetes, and this leaves chronic disease care needs unmet.
the differing models of care
in mental health conditions, there’s a psychopathology component that drives their onset and conditions.
“something’s wrong with the psych,” said dr. vallis. “in disease-based stress, it’s normal.”
essentially, when someone experiences a mental health condition, something has gone wrong whether through biology, genetics or even trauma. but when someone with a chronic disease develops depression or anxiety, it’s seen as a natural and normal response to what’s happening to them.
the chronic disease psychologist is an important piece of the care team, but they are not the most important part because “the main problem is disease.”
“the psychologist is valuable, absolutely can be very helpful, but at the end of the day, because it’s not psychopathology, there’s nothing wrong with the person. it’s a disease, and therefore the disease expert actually becomes, by default, an excellent therapist, really, if they’re prepared to sort of expand their scope a little bit beyond.”
dr. vallis notes that he spends a lot of time working with colleagues to help them learn how to adapt and adopt ways to help patients with the emotional side of things outside of a psychiatrist’s office because if the main problem isn’t psychological, addressing it as if it were won’t work.
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“the primary therapy should be disease-based, but then people like me really believe that the psychological piece should be woven into it,” he said.
it’s not simply about treating new depression that’s developed because of chronic disease, but rather acknowledging and addressing that living with a chronic disease robs people of themselves and their quality of life.
“you’re talking about people who are, i mean, they’re competent people. and so it really means that we can work with them collaboratively.”
the main goal is to create a model of care that focuses on the disease itself while helping people “not get overwhelmed by the disease.”
‘surrender to win’ in chronic disease
“i use the phrase surrender to win. so, if you’ve got a chronic disease, you really need to accept the disease. but remember, one of my very first statements was nobody wants to be sick,” said dr. vallis. “it’s like … ‘i hate this disease, and you want me to accept it?’ exactly. that challenge, i call disease acceptance. and it’s really important because if you live with a chronic disease, it doesn’t go away, but for most people, the disease kind of has good times and bad times and ups and downs.”
for example, many people with chronic disease have what is known as relapsing-remitting, meaning sometimes the disease and its symptoms are very active, whereas at other times it’s quiet enough that people can function without it being front and centre.
when the disease does relapse, it becomes harder and harder to go through it all over again, which drives patients further and further into a bad mental state.
but part of the mental side of chronic disease is accepting that the disease exists, it has to be managed, and the more a person accepts and cares for themselves properly, the easier it will be to deal with the physical aspects of the disease.
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“that’s probably one of the most important psychological accomplishments, and we see this tremendously with chronic disease,” said dr. vallis.
leaning on psychology as a non-mental health-care provider
for medical providers, seeing that one of their patients is dealing with anxiety, depression or other mental distress due to their disease often sets off bells in their heads that they are not equipped or trained to deal with it. but because these mental side effects of chronic disease are based solely on a patient’s physical condition, adding in psychology is a vital component to being able to adequately care for patients.
dr. vallis asks medical providers he works with whether or not the threat causing mental health symptoms is related to disease and, if it is, says that they’ve got to do something about it.
“that could be bringing a psychologist into your clinic. it could be spending a bit more time with that person, because that’s the other thing, because these people aren’t vulnerable and don’t have pathology; they benefit from five-minute conversations about coping,” he said. “a gastroenterologist sits down in front of you, looks you in the eye and says, ‘can i just say something to you?’ and you say, ‘sure.’ ‘i’m really, really sorry you’re going through this, and i’ll do everything i can to help you.”
a simple 30-second acknowledgement can go a long way for people, because, as dr. vallis notes, they’re not vulnerable in a psychiatric sense. they’re just dealing with something extremely difficult and reacting appropriately.
“the average person living with a chronic disease who has a doctor that reacts like that will walk out of the clinic thinking, ‘oh my god. i’m so lucky to have my doctor because my doctor is so understanding and supportive,’” he said. “now, if you have psychopathology, that’s not going to work, right? that’s just not going to cut it.”
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if the disease is causing the mental symptoms, it’s the disease team’s responsibility. the physicians that work with patients living with chronic disease understand better than anybody as well, because they see the burden everyday through their patients, so if they were able to incorporate more psychology into the medical care, their patients would be better for it.
for dr. vallis, patients need to be able to voice their concerns in a way that gives them a platform beyond what they’re going through physically, and medical providers are the only ones that can help them feel more comfortable doing so.
“you are the most important person,” he said. “i try to say to my colleagues, ask the patient how they’re doing. raise the issue of disease acceptance. talk about surrender to win, these concepts … give people permission.”
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