What counsellors need to understand about chronic illness

A therapy session. Photo by Vitaly Gariev on Unsplash‍ ‍

“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.” - Jennifer Starzec, Determination

One of the many benefits of counselling for clients is the feeling of being seen, of their tangled experiences and feelings – sometimes not fully understood by themselves – being brought into the light and held gently and without judgement.

For people with chronic – and often invisible – illnesses, that feeling of not being is seen is magnified a hundredfold. Their experiences of their symptoms, of their feelings, and of their sense of self are often misunderstood or simply ignored. They may find community amongst other chronically ill people, but always experience a sense of otherness from the rest of society.

It is possible that someone who has not lived with chronic illness can never truly understand the experience fully, as Jennifer Starzec felt. But as counsellors, it is our duty to try.

People with chronic illnesses make up 41% of the population, with that number increasing every year. You will undoubtedly have come across many chronically ill people in your practice already, but perhaps that number surprises you.

Chronic illnesses are often aligned with invisible illnesses because their symptoms 1) are not always visible to the naked eye, and 2) vary in severity and intensity. That means that a client who easily walked into your therapy room one week may be bed-bound the next.

As you can imagine, this lack of visual indicators of their disability, and the inconsistency in their daily functioning, can draw negative attention and judgement from the people in their lives. Debilitating symptoms can be called “laziness” or “all in your head” by family members, partners, bosses, and professionals.

Add to that the difficulty in chronic conditions being diagnosed in the first place. There are repeated patterns of symptoms of chronic illness being misdiagnosed as depression and anxiety, no tests that give a clear answer whether a person has a particular condition or not, and symptoms that span multiple systems of the body.

If your client has managed to get a diagnosis – which is not a given – their journey through the healthcare system can be traumatising as their experiences are repeatedly invalidated, they have to advocate for themselves despite lacking the physical and mental energy, and often have to endure intrusive and painful procedures.

These experiences can understandably lead to a lack of trust in professionals, and many chronically ill clients may be approaching therapy with the same exhausted wariness as they approach their GP and hospital appointments.

We have to be different. We are not here to cure them, and nor do they want us to. We are here to listen without judgement or assumption, to hold their feelings and experiences, to see them as the whole person.

We may not ever be able to truly understand, but we should continue to try. Empathy and compassion are the tools with which counsellors see what is hidden or invisible.