My Husband Is Not Lazy

Suppose you know a man who doesn’t have a paying job (and isn’t looking for one), who gets up late, goes to bed early, and often spends a good deal of his waking hours lying on the couch; a man who doesn’t always get his share of the household work done on time; a man who frequently isn’t available if you need a volunteer.

What would you think of him?

"On 29 October 1941 the 53rd Brigade (18th Division) embarked on the Polish troop carrier 'Sobieski' at Gourock in Scotland, to sail for an unknown destination (Egypt). It arrived at Halifax, Nova Scotia, on 8 Art.IWMART1574619

Here’s the thing: that man is my husband (aka The Caped Gooseberry). And I think very highly of him. Because he isn’t lazy; he has Chronic Fatigue Syndrome (CFS).

And unfortunately, a lot of people seem to think that unless you’re visibly ill, you must be a hypochondriac, a malingerer, or just plain lazy. “It’s all in your head.” Well, so is a brain tumour, and who would tell someone with cancer that they just need to pull themselves together?

There are two particularly frustrating reactions to my husband’s illness. One is the suggestion that he just needs to try [insert pet vitamin/mineral/other here] or getting more exercise, or self-hypnosis, or… As though being cripplingly unwell for years at a time only happened to people who didn’t think to try a herbal remedy, or eat lots of oranges.

Evidence of Toronto people

The second is the suggestion that he’s only ill – or pretending to be – because he prefers it to work. Which isn’t true. My husband does a larger share of the housework than a great many able-bodied men (although, to be scrupulously fair, they’re more likely to spend hours each day at a paying job). He’s worked when his health has allowed it, to the extent that he could, and he gets very frustrated when his energy levels force him to stop work.

He could just go on a benefit and lie in bed all day watching TV, but he doesn’t. He doesn’t even spend all day in his jammies (which, I must admit, I would be very tempted to do in his place). He dresses well, even if that’s the only thing he has the energy to do that day. And when he can, he works – on programming, audio-book narration, or other projects – even though the work is unpaid.

The thing is, the Caped Gooseberry doesn’t look sick, apart from an occasional tendency to resemble a tomb effigy when at rest.

St-Denis Heinrich-II

So it’s easy for people to assume that he isn’t really that unwell. Easy to assume that if they see him out doing the grocery shopping or going to church, he must be all right. They don’t see the rest of the day spent lying down to make up for it. They don’t see him when he’s too tired to leave the house, or too tired to even sit at the table and chew.
In some ways, it’s an invisible disorder, because not only are the symptoms frequently not visible, the sufferers often ‘disappear’ as well.

But Chronic Fatigue Syndrome (also known as myalgic encephalomyelits/ME and chronic fatigue immune dysfunction syndrome/CFIDS) is a very real illness.
According to Wikipedia, symptoms may include “malaise after exertion; unrefreshing sleep, widespread muscle and joint pain, sore throat, headaches of a type not previously experienced, cognitive difficulties, chronic and severe mental and physical exhaustion…. muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, painful and often slightly swollen lymph nodes, cardiac and respiratory problems.”

General Thaddeus Kosciusko by Benjamin West

And then, with classic understatement, the article adds “Quality of life of persons with CFS can be extremely compromised.”

And there are few things worse than having your life maimed by illness, only for people to treat you as though you’re a slacker, a bludger, or just hopelessly inept. As though you aren’t really suffering, and if you are, it’s your fault.

Of course, most people are too polite to suggest to the Caped Gooseberry that he just needs to pull himself together and get on with it. So they suggest it to me, instead. Because there’s nothing offensive in telling a woman that you think her husband’s a lazy slacker who pretends to be sick to avoid having to get a job like a real man.

'Around the Moon' by Bayard and Neuville 04

Seventeen million people are said to have Chronic Fatigue Syndrome. That’s a lot of people being looked down on by people who don’t know their circumstances, and, sadly, by many of those who do.

So please, before we judge the person doing the grocery shopping in their pyjamas, or the person whose house or yard isn’t up to neighbourhood standards, please, let’s remember that we don’t know what else they’re going through, and they don’t need the weight of our condemnation added to the burdens they’re already bearing.

12 Replies to “My Husband Is Not Lazy”

  1. My greetings to the Caped Gooseberry! I’m Lynne from The Dreamstress’s blog. I know that marble look – happens to me, too. Thank you for this post. I am so glad your husband has a partner who understands. This is not always the way it goes.

    Things are improving. Doctors are a bit better at recognizing that ME is a real illness, not a psychological condition. There is promising research being undertaken. But still a long way to go.

    Stay strong, the two of you.

  2. It is so easy to condemn, but, really with minimal effort, it’s not that much harder to pause and try and put yourself in someone else’s shoes. I remember a day when I was *so* impatient to get to town, not really for any genuinely good reason. I was behind a 4×4 going at 60 in a 100 zone and extending my 20 minute commute and I fussed and fumed behind the wheel, which is something I actually rarely do – I’m not usually subject to any road rage. Anyway, I got to town eventually and forgot all about it. Until a couple of months later, I hit sheet ice and rolled my car in a horrific accident that wrote it off, and nearly had me too. A couple of weeks later when I got behind the wheel of a borrowed 4×4, I couldn’t cope. I ended up going at 30 down that same stretch of road, so, so stressed at the thought of having an accident and panicked by the other cars racing up behind me impatiently and overtaking me on the bends. And I thought back and felt ashamed – I’d much rather whoever was in front of me that day went as slow as they liked rather than have a breakdown or cause a crash, which I felt on the brink of – and it’s helped me ever since to consider what might be going on with someone else rather than focussing on what’s going on with myself and how a situation first appears to me.

    I so sympathise with you and the Caped Gooseberry, and I hope that there is much happiness in each day along with the hardship.

  3. I made my way here from The Dreamstress’ blog – this is another beautiful and accurate account of ME/CFS. All my best to you and the Caped Gooseberry. I often wonder how many of those who condemn ME sufferers for being “lazy” would react if they were told the person instead has cancer, MS etc. Just because an illness is invisible and has no discovered treatment does not mean it causes any less suffering. In fact, sometimes it causes more.

    1. Hear, hear! That “no discovered treatment” is at least (sometimes) beneficial in helping people realize that ME/CFS sufferers aren’t sick because they choose to be.
      Thanks for visiting!

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