ME is still woefully misunderstood by our health and welfare systems | Lia Leendertz

We got some help after my husband was diagnosed with ME but that soon evaporated. Friends and family had to step in

Lia Leendertztheguardian.com, Thursday 8 August 2013 08.00 BST

Protesters demonstrate against Atos's involvement in tests for incapacity benefits. 

Photograph: Neil Hall/Reuters

My husband got a diagnosis of his ME (Myalgic Encephalomyelitis) early on, something of a rarity in a landscape populated by disbelief and dismissal. I didn't have the years of wondering about this mysterious exhaustion and I clearly remember the relief: someone knows what is wrong and can start to treat it. I was placed in the role of carer at the same moment that I thought we were saved. We'll get support and help. Hooray! Excuse me while I take a weary and knowing side glance to camera.

On receiving his diagnosis Michael had a classic response: he slept almost solidly for three weeks. It was a terrifying introduction to our new reality and I ricocheted between our then two-year-old and four-year-old, between snatches of the freelance work that was now our only income – and endless crying. It was three weeks in which my horizons shifted dramatically inwards. Any thoughts of progress – maybe we'll earn enough for a foreign holiday one year, maybe we'll get round to painting the bathroom – were quickly dropped. Those three weeks said: you will just get by, you will cling on to what you've got if you're very lucky.

Michael was given a plan for dealing with the exhaustion he was suffering. It is known as "pacing" and the aim is to iron out the extremes. He had been trying to live normally, but then every two weeks was collapsing for days. With pacing you do the bare minimum even when you are feeling OK, with the result that your body doesn't need to collapse. There are notably few guidelines on what the other people in a sufferer's life do with this instruction, but the flip side of that coin is fairly obvious. He does nothing: you do everything.

I don't recall any emotional support being offered to me, but there was at first some financial help. Michael was granted employment and support allowance and my son, who had just started school, received free school meals. It felt so civilised, and a vast relief: we were slipping and someone said: "It's OK, we won't let you fall." It was what we needed while we worked out a new way to get by, but sadly it didn't last nearly long enough. It was granted prior to Atos's arrival on the scene, and on Michael's first Atos assessment it was promptly withdrawn. He could stand (tick), walk across a room (tick), lift a box (tick), so was fit to work. There was no box related to sleeping until 11am and napping for two hours at 3pm and needing to do little in between. Atos doesn't understand ME, and I have a sneaky feeling it isn't too keen to try. The message was clear and brutal: you're on your own, sink or swim.

We really could have sunk, but wonderful relatives and friends have been the safety net that the state failed to be, and I have worked full time plus nights for the past few years to try to claw our way back. I have more grey than I should have, but we have a home. We were also lent money to put Michael through the Lightning Process, a strangely cult-sounding thing that actually helped him turn the corner. He is much better than he was, though still not able to work.

The boring fact is that ME is so mysterious that doctors can't really help, and that this extends to a wilful misunderstanding by our welfare system. In my experience there is very little meaningful support for sufferers, less for carers, and the financial battles are terrifying. My horizons are starting to stretch again now, because I have been lucky. My heart bleeds for you if you haven't been.

Guardian

This article was commissioned following a suggestion by tumbling to mark the 25% ME Group's Severe Myalgic Encephalomyelitis Understanding and Remembrance Day.