Most of us take for granted that, when we get sick, we can visit a doctor, receive treatment and start to feel better. For many people, however, this journey back to wellness is much shakier. Their experience is confusing, frustrating and painful. It leaves them doubting their sanity. After a few trips to doctors and specialists, these folks might be told that there is nothing ‘physically’ wrong with them. Despite their very real suffering, they might even be dismissed as malingerers or hypochondriacs. These folks have what’s called an ‘invisible disease’.
‘Invisible disease’ is an informal term commonly used within medical and research settings to describe conditions that cannot be easily detected and diagnosed. Fibromyalgia, endometriosis, irritable bowel syndrome (IBS), chronic fatigue syndrome (also known as myalgic encephalomyelitis) and multiple sclerosis (MS) are just a few examples. Many of those who have an ‘invisible’ ailment will also suffer from poor mental health. The relationship between the two is complex.
Consider Susan* – an energetic, sharp-witted young woman whose disarming sarcasm cuts through the emotional impact of what she shares in our therapy sessions. Recounting her last visit to the doctor, she is visibly exasperated: ‘They did another ultrasound and said they couldn’t see anything, and that, to get an official diagnosis, I’d need surgery … but that I don’t need surgery yet. I feel pathetic. Like I’m too delicate for this world, like I can’t even handle life.’
For years, Susan has experienced intense pain during her period, as well as other symptoms of endometriosis. Despite her attempts to power through these episodes with sheer grit – something that, as a marathon runner, she has plenty of – the pain has been so intense that she has sometimes taken as much as a week off from work. Susan calls these painful episodes ‘the demon’ because, when they happen, she feels like she is possessed, losing control over her body, sometimes even fainting.
Together, we explore her thoughts and feelings about ‘the demon’. In our sessions, she chides herself for not being stronger in those moments. The nagging thought that her own weakness might be the problem causes her a great deal of anxiety, and she worries that the life she envisioned for herself might not be possible.
The stories I hear in my therapy practice echo my own experience with endometriosis. Like many endo sufferers, I felt levels of pain that had me writhing on the floor for hours at a time for nearly a decade before I received a diagnosis. Despite one in 10 women having the condition, lengthy waits for a diagnosis are typical. I can relate to the frustration, worry and anger that come with being dismissed or ignored by medical professionals when one seeks answers.
When I finally got my diagnosis, I had just started training to be a psychotherapist. That’s when I began to learn more about how pain and illness can be treated, in part, through psychotherapy – not because the symptoms are ‘all in the mind’, but because the mind and body are intricately connected.
In some cases, the relationship between physical symptoms and mental symptoms may actually be bidirectional: one set of symptoms impacts the other, and vice versa. For example, a recent study identified a potential association between psychological trauma and endometriosis. Even when accounting for a genetic predisposition to endometriosis, women who suffered a traumatic event were more likely to go on to develop the disease. In another study, women with endometriosis who received surgical treatment for their physical discomfort saw a significant improvement in their mental health as well, including a decrease in symptoms of anxiety, depression and emotional distress. The implications of studies like these are that a mental health condition can precede and perhaps increase the risk of having an invisible illness like endometriosis; and, the pain and discomfort of living with an invisible condition can lead to poorer mental health.
It makes sense that a person would get stressed by unexplainable symptoms with high levels of pain
One possible neurobiological link between mental health and the physical symptoms of an invisible illness is the hypothalamic-pituitary-adrenal (HPA) axis. This system of organs, including the brain, is involved in the transmission of adrenaline and cortisol throughout the body, enabling it to mount a stress response. When this system responds to acute stress, there is a surge of activity in a person’s nervous system that prepares them to react to a potential threat – for example, to jump out of the way of a moving car. Activated in short spurts, this system keeps us alive. But if it’s engaged continuously to respond to chronic stress (such as in post-traumatic stress disorder), it starts to wear down the immune system. It may lead to inflammation, and the development or worsening of an invisible illness.
The emotions that often accompany an invisible illness can, in turn, further activate the HPA axis. It makes sense that a person would get stressed by experiencing scary, unexplainable symptoms that most often include high levels of pain, disrupt every aspect of life and have no available cure. The role of stress in the development and experience of invisible diseases highlights one reason psychotherapy can be helpful for those who are living with them.
Some people are uneasy about using psychotherapy to help patients with these conditions, and that is understandable. Unfortunately, psychotherapy and invisible diseases have a long and problematic history. The most influential physician to practise the ‘talking cure’, Sigmund Freud, believed that repressed thoughts and emotions could lead to psychosomatic illnesses, many of which we might now recognise as invisible illnesses. From his perspective – and the thinking of the time – it seemed only sensible that what couldn’t be diagnosed through physical observation might originate from the mind. Diagnoses such as ‘hysteria’ and ‘conversion disorder’ were used to account for somatic symptoms that otherwise escaped explanation.
As the decades went on, those who had symptoms that were easier to observe and understand were given appropriate treatments and cures, while patients for whom medicine did not yet have an answer were given a vague mental illness diagnosis. More recently, increased understanding about conditions such as chronic fatigue and fibromyalgia has enabled doctors to provide a more accurate diagnosis for people who might have previously been deemed ‘hysterical’. Still, the shift away from this outdated thinking has been slow – after all, the diagnosis of hysteria wasn’t removed from the Diagnostic and Statistical Manual of Mental Disorders until 1980. Between Freud’s enduring influence and the historical lack of diagnostic tools for these conditions, stigma around invisible illnesses continues to persist.
Despite this complicated background, it would be a mistake to discount therapy’s usefulness for people with invisible illnesses. Talk therapy cannot cure these illnesses, but it can provide some relief.
Psychotherapy can also help folks with the physical discomfort of their disease, including chronic pain
A number of evidence-based psychotherapeutic interventions have been found to help with both the emotional and physical distress of living with these conditions. For example, acceptance and commitment therapy (ACT), a mindfulness-based behavioural approach, has been shown to reduce psychological distress and improve the overall quality of life for those suffering from invisible illnesses such as chronic pain, fibromyalgia and multiple sclerosis. Like Susan, many folks who suffer from an invisible illness feel as if their body has betrayed them, or experience guilt or shame for not being able to prevent their disease. They often feel grief for the pre-disease life they’ve lost. As most of these illnesses are incurable, the ‘acceptance’ component of ACT can help people let go of a battle that cannot be won – the resolution of their illness. Once this happens, there is more energy and space for a new reality. Through the psychotherapeutic process, clients can explore what a meaningful and full life might look like in the context of their illness, and receive support as they commit to living by their values.
More broadly, psychotherapy can address a wide range of concerns that are commonly associated with invisible diseases. A therapist can work with someone on developing better coping mechanisms and decreasing the symptoms of anxiety and depression that often overlap with these illnesses. Psychotherapy can also help folks with the physical discomfort of their disease, including chronic pain. Through somatic or mindfulness-based interventions, which I use in my practice, clients fine-tune their interoceptive skills so that their brain pays less attention to pain signals that are distressing, but most often harmless (ie, they don’t correspond with tissue damage or disease progression). Clients are taught to explore and stay with sensations – including ones that may be distressing – while using relaxation and grounding techniques to reduce the distress they feel. This process can re-train an overly alert system to be less vigilant to these sensations, helping to avoid a stress response that often makes the pain much worse.
Perhaps the most powerful way therapy can support those with invisible illnesses is by helping to reconcile the mind with the body – offering a space to make sense of their experience through validation and compassion. I’ve seen the relief wash over many of my clients’ faces when I tell them I believe their pain, and that I’ve been in their shoes. Too often, their suffering slips through the cracks of a medical system that was designed to treat the body and mind as separate.
While psychotherapeutic approaches were once seen as stopgap measures for illnesses that medicine couldn’t yet explain or treat, modern medicine now offers many people living with invisible illnesses clearer answers and more effective interventions – including medications, surgeries and other treatments. As primary care providers increasingly aim to deliver integrated care grounded in a biopsychosocial model, psychotherapy is now better understood as a complementary treatment for conditions like chronic pain, IBS or endometriosis. Many of my clients have been referred to me by their doctors in an effort to support both the physical and psychological aspects of their experience, alongside the medications or other treatments they’re receiving.
Over the course of our sessions, Susan learns to befriend her ‘demon’. She comes to terms with the fact that it is a part of her and that she has to learn to live with it. We work on coping strategies that feel supportive for her, including advocating for herself at the doctor’s office, pushing for a referral to an endometriosis specialist, and loosening up her stressful productivity regimen. She also develops her internal awareness, through which she becomes better attuned to her body’s cues for rest. Through this process, mind and body reconcile. She develops a better relationship with herself, her body and her demon – so that, even in its presence, she may live with some peace and joy.
* Susan is a composite character whose story reflects the experiences of many clients with invisible illnesses, including people of all ages and backgrounds.
