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What not to say to those with chronic illness (and 5 ways to help)

How can Christians best serve those with Chronic Illnesses such as ME? Tanya Marlow explains 

As someone who has had a chronic illness for 21 years, I've heard my fair share of inappropriate and insensitive advice and comments, including from well-meaning Christians. The truth is, we’ve all said the wrong thing at some point to those who are suffering from invisible illnesses. Here’s five questions to avoid and five ways to help Christians with ME and other invisible illnesses: 

1. "Chronic fatigue, where you’re just tired all the time? You're lucky."

Classic Myalgic Encephalomyelitis (ME) is not just feeling tired. It's a multi-system disorder where the body’s inner batteries (mitochondria) are dysfunctional. The defining characteristic is that overexertion worsens symptoms. 

There's a quicker form of ME (circa 3 years) and a long-term version. Full recovery is only 5-10%. Most improve somewhat with rest, but sadly 25% deteriorate (according to Dr Charles Shepherd, ME Association).

Though rare, it’s possible to die from ME. Autopsies of severe patients reveal physical damage: dorsal root ganglionitis, multi-organ failure, heart disease.

Mild ME looks like working full-time, but using all spare time to sleep. Very severe ME looks like lying in a darkened room in constant, agonising pain; unable to move or speak; unable to hear whispered speech for more than a few minutes before your brain shuts down; tube-fed because you're too weak to swallow or chew. It's a colourless, silent, decades-long nightmare, often ending only in death. 

2. "But you look so well…?!"

Instinctively, we judge with our eyes whether someone is genuinely ill or faking. But with invisible illnesses like ME, Fibromyalgia, Lupus, MS, POTS etc, you can’t tell. This phrase puts pressure on sick people to prove they’re not fakers.

Sometimes patients look well because of make-up. Sometimes they’re smiling while carrying great pain.

The key is to listen and believe, rather than look and falsely judge. 

3. "Have you heard of….?" 

Historically, sick people either recovered or died. So chronic, on-going illness unsettles us.

This is why we love the Quick-Fix Solutions: Lightning Process, NHS’ Graded Exercise Therapy with CBT, Reverse Therapy, Mickel Therapy, EFT etc. 

You know of someone who recovered with a Quick-Fix. (Everyone does.) But please pause before sharing that story. 

At first, ME patients are eager for information, and will likely welcome your advice. But if, like me, they've had it for 21 years, they will have heard all the Quick-Fix solutions many, many times over. 

4. "You really should try X-Therapy - what have you got to lose…?”"

(Note the pressurised tone: evangelical Christians risk being evangelistic about things other than the gospel!) 

The short answer? An awful lot.

The therapy that cured your friend could kill a different patient. 

The ME Quick-Fixes are largely psychiatric. The underlying theory is that ME is a behavioural disorder: symptoms are cured by positive thinking, retraining your body to think itself better. These therapies can be helpful for some, but only to the extent that the illness is either caused or sustained by stress or psychiatric issues. 

However, ME is categorically NOT a psychiatric illness: the World Health Organisation officially lists it as a neurological disease (like MS or Parkinson’s). In 2016, USA’s Institute of Medicine undertook a survey of 9000+ research papers on ME and agreed. For severe ME patients, the best hope is antivirals, Ampligen, or Rituximab (a cancer drug). 

Psychiatric treatments can often help physical illnesses - but telling an ME patient to ignore their symptoms is playing with fire.

I followed the NHS Graded Exercise Quick-Fix while my ME was mild: by the end I was in a wheelchair.

I’m not alone. The biggest survey of treatments for ME patients found that NHS’ therapies harmed, not helped, the vast majority, and the Lightning Process made 21% worse. 

The stakes are high. Beware of pushing a therapy without considering the wider statistics and research. Instead, end your recovery story with seven magic words: "I know this doesn’t work for everyone…" 

5. "Do you truly want to be well?" 

My only authentic answer to this is to cry. It implies I’m not well because I secretly or subconsciously wish to be ill. To be asked it once is insulting; to be continually asked it is traumatising. Sadly, well-meaning Christians frequently ask this. Just – don’t. 

See also: "Do you have unconfessed sin in your life?” Naturally, the answer is, "Doesn’t everyone? Including you, now, by asking that thoughtless question".

We must stop using spiritual language to blame patients for their illness. We need a theology of the mystery of suffering. Remember Job’s comforters blamed Job for his illness, and God rebuked them.

Five Ways Christians Can Help:  

1. Listen, and believe

With the culture of shame and disbelief surrounding invisible illnesses, just offering compassion is a huge gift. 

2. Ask how you can support them

Realise that the patient is the expert, not you. 

3. Keep in touch; meet them on their own turf

ME is very isolating. Some can only attend a small group if it’s in their home. 

4. Be patient if they’rpe unreliable

It’s not their fault, it’s their illness. 

5. Encourage them to serve

So often we view chronically ill people as recipients of help, but they have a lot to offer. Value the ways they serve.

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