The Problem With “Mild”

One of the things I’m looking at with my research is the language used to describe conditions like hEDS, POTS and MCAS (known collectively as the triad), and whether some of that language might actually add to the challenges of living with them.

This week, I’ve been thinking about the word “mild.” I have significant issues with this word, particularly when it’s used to describe a person’s overall experience rather than how one particular symptom is impacting them at that moment.

Conditions like hEDS, POTS and MCAS can lead to a variety of different symptoms on any one day. They may have mild joint pain, mild dizziness, mild gut pain, mild constipation, mild fatigue and mild temperature intolerance. If you were to ask them to describe any of these symptoms individually, they may absolutely be mild. But they don’t experience them individually.

How many symptoms does it take before you can describe yourself as moderately impacted? How do you answer a symptoms out of 10 question when you have 8 different symptoms sitting individually between 3-4 on the scale?

Often the 0-10 scale is used for pain, and for those with the triad, and especially for neurodivergent people, it can be a very challenging question. Compared with what? Right now or usually? At rest or moving? If I've lived with pain for fifteen years, is my 4 the same as someone else's 4? How many does it need to be for you to help me rather than tell me it’s not too bad, that’s just mild pain?

When we describe something as mild, are we talking about the intensity, frequency, whether it’s medically dangerous, whether it requires treatment, whether it interferes with our daily life or whether it’s comparable with someone else’s experience?

And if you have to make a small adjustment for every mild symptom, how many adjustments does it take to significantly impact your life? And then what happens if they fluctuate?

Sometimes the word mild can lead to judgement too. Both from others:

“You’re lucky …”

“It doesn’t seem to affect you much…”

“My friend has it worse…”

“You should be able to…”

And from yourself:

“I shouldn’t complain.”

“I don’t really count as disabled.”

“I should be able to manage.”

How much difficulty are we entitled to if our symptoms are constant, but mild? When do you get to take a sick day if you feel sick every day? At what point are you sick enough to stop? And how do we teach our kids to take better care of themselves than we do of ourselves when we don’t know the answer to these questions?

I think those of us with chronic illness know that one severity word, or one severity scale, isn’t enough to tell us what we need to know about someone's functioning or experience when multiple conditions and symptoms coexist. I’m interested in how we can communicate better in this space.

I’m wondering if, rather than thinking about how we feel internally at any given minute, we might get more information through thinking about questions like:

·       What is harder at the moment, or what can’t you do today?

·       What are you doing differently because of the way you feel?

·       How long can you tolerate an activity before you need to change what you're doing?

·       What happens if you push through?

·       What extra things are you already doing to keep functioning?

·       What else are you managing at the same time?

·       How much of your day is organised around preventing it from getting worse?

When chronic illness is complex, fluctuating and multisystem, perhaps the problem isn't that people struggle to describe how they feel. Perhaps the words and scales we're using aren’t made to describe it.