Building In Public
How we talk about invisible illness
September 7, 2022
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Hello! 👋

This is a (fairly) brief overview of how we write and talk about invisible illness here at Visible. Many of our team have lived experience of invisible illness, but we also recognise that as we continue to grow, not everyone will have lived experience or be familiar with how to write and talk about these conditions.

So we’ve created this guide to help them, and we hope it helps others who are new to the world of invisible illness.

What do we mean when we talk about Invisible Illness?

At Visible we support conditions that benefit from rest and pacing and lack an accepted diagnostic test. Sometimes we’ll refer to these conditions as “invisible illnesses”, though we’re aware that there are other conditions that are invisible, like mental health conditions.

Sometimes we’ll refer to the conditions we support as energy-limiting conditions. Though this is not a well-known term and it puts an emphasis on fatigue when sometimes this is not a person’s most debilitating symptom. 

We use the term ‘People’

People with invisible illnesses can often feel dehumanized when seeking medical care. When referring to our users in the third person, we prefer to say ‘people’, not ‘patients’. We are people after all.

We recognize that every person has an individual experience of invisible illness

Regardless of what diagnosis an individual might have, no two experiences of invisible illness are the same. Symptoms, severity and experience of these illnesses can vary widely as can peoples’ response to different interventions. We want to share strategies based on sound science rather than subjective opinion.

We never promise recovery

Some of our users will recover, but some will not. Our aim is to support improvement or management of symptoms with the hope of improving quality of life. We’ll never promise recovery or a cure.

Improving mental health can be an aid, not a solution.

Wherever we encourage strategies to support mental health we should be clear that these are not solutions. We ask our users to consider emotional stressors but understand that these don’t cause these conditions.

We use the term Post-Exertional Symptom Exacerbation

Post Exertional Malaise or PEM has traditionally been used as a hallmark of invisible illness. However we don’t think this definition accurately reflects what happens when people physically, cognitively or emotionally over-exert. Experts are starting to use Post-Exertional Symptom Exacerbation or PESE (pronounced ‘Peace’). We prefer this definition, so we’ll use it too.

We don’t choose how people feel

Words like ‘suffering’ are words for people to use about their own personal experience, it’s not for us to project onto them. For example, instead of ‘suffering from’, we can use ‘living with’ or ‘have’.

We keep our writing as concise as possible.

Some of our users (and our team!) have brain fog. We do our best to keep it short and simple.

Finally, we take an optimistic approach.

We aim to write with optimism and with the belief that our understanding of these illnesses will only improve. We can guarantee there’ll be no photos of people in bed with their heads in their hands.

References

Stop guessing, start measuring.

Join our movement as we improve the understanding of invisible illness.