A New Name

One of my friends, Angie, spent most of her teenage years almost bed-bound with the condition now recognised as ME – or Myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (CFS). Another good friend has been recently diagnosed with the illness and has had to change her whole life in order to be able to cope with the most basic of tasks.

Even today, not that much is known about ME, but when Angie was growing up, it was almost unheard of.  She writes movingly about her struggle with the sickness in her book, ‘Held’ and how it has shaped her life and Christian faith. Aside from being in a great deal of physical pain, she had to deal with criticism and scepticism from friends and loved ones, who felt convinced that it was all in her head.  It was this and not the condition itself, which brought her to the brink of despair and suicidal thoughts.

She writes;

‘It was clear that my consultant was not the only one who didn’t accept the physical reality of my symptoms.  Others, including friends and authority figures, believed I was imagining my illness.  Such disbelief saw my inner world spiral.  How could people I had always known and trusted think that I would do that? How could they think that I wanted to be sick?…Was I really ill or did I just think I was? Could I trust what I thought, or were those adults automatically right and I wrong?…After a number of months these fears inwardly spiralled to the point where I believed that to die was the only thing I could do to make everything better’.

Thankfully, Angie didn’t give in to these impulses.  And in time, she received a positive medical diagnosis of ME – the first step to managing the condition and moving back into a life worth living. Today, ME is recognised as a neurological illness by the World Health Organisation, but it can still be dismissed or misunderstood, causing further emotional distress to those who are already very sick.

ME is a real, often relapsing and debilitating illness, affecting up to 150,000 people in the UK. Its symptoms vary in severity, but include abnormal exhaustion, muscular and joint pain, headaches, sensitivity to light and sound and poor concentration. It is not simply feeling ‘a bit tired’.  Studies have shown that most sufferers are unable to work to full capacity, and that 25 per cent are severely disabled with some house/bed-bound. The cause is still unknown, and no cure or effective treatment has yet been found.

As part of her recovery, Angie had to learn to accept the condition and to reject other people’s judgments as well as her own, misplaced sense of guilt.

She comments, ‘Whatever people’s reasons, I was learning that suffering from an illness no one believes in brings a deep sense of rejection, forced loneliness and isolation’.

But perhaps the most painful aspect of such rejection was its source.  The hurtful comments didn’t come from those she didn’t know, but people in her church, including those in authority. It was then heightened by well-meaning Christians who promised her instant physical recovery, if she would only show faith. When such recovery was not forthcoming, she found it very difficult to keep trusting in a loving and powerful God.

Of course the Lord can and does heal, but this is by no means guaranteed.  It may seem a kindness to proffer such specific hope, but as Scripture reminds us, hope deferred actually makes the heart sick. And healing comes in different forms, not all of which are physical. Similarly, when faced with situations or illnesses we don’t understand, our temptation can  be to retreat or to criticise, from a safe distance.

Our words have the power to heal, but also to hurt, so we must speak with care. Instead of supplying the answers, sometimes what’s needed is to let those  suffering speak for themselves. And then for us to really listen.