Interpersonal relationships can be difficult enough to navigate, at the best of times; add intimacy into the mix and it becomes rather like placing tiny bits of foil into a microwave oven – you know that the volatility will become evident, but whether the appliance will survive the onslaught is anybody’s guess. In that light, adding an illness, or serious accident to those tiny metallic flames can be like finding an unexploded bomb in your basement: everyone was getting along fine in ignorance of its presence, but now its visible and the existential threat is very real. You can tiptoe around it, you can diffuse it, you can even try to ignore it – but the one thing you cannot, and should not do is agitate it.
I can only write this from my perspective (as a woman, with very specific medical conditions, married to a man) and I wouldn’t dare to attempt to make assumptions about how illness and disability affect those who are not like me. So, essentially, I’m writing about the things that disturb the explosives in my life – I hope some of them will resonate with some of you.
1. Be knowledgeable.
Make sure you understand what your spouse is suffering from and how it affects their everyday life. In the first instance, this shows both solidarity and a willingness to take the situation seriously (allies can be hard to come by when someone has an illness that isn’t well publicised or understood). But, perhaps more importantly, should disaster happen there is a good chance that you will be the person trying to describe the condition, and it’s symptoms, to the emergency services. Saying “She has a fibroid-thing” or “She gets really tired” is simply unacceptable in a medical emergency. Learn the actual names of the illnesses and the symptoms that have the most detrimental effects. And if you have trouble remembering the names of their various medications, simply create a designated album on your phone and photograph all of the labels (I do this myself, for those times when brain-fog catches me out if I’m dealing with a new clinician.) Mis-information can actually be more damaging than remaining silent. Staying informed is caring.
2. Stay Alert.
Keep paying attention, and I don’t mean the so called romantic notion of ‘being attentive’. Even if your spouse hasn’t been officially diagnosed, yet, there would have been clear indications of which tasks they could perform unaided, and which required assistance. For me, I find that being able to do the laundry (don’t ask, I have no answer…) is proof that I’m not a complete invalid. So if anybody tries to ‘help’ I find it both distracting and draining (and I really don’t need anymore exhaustion, thanks). Cleaning the bathroom is arduous, and may take me all day, but it is still something I can just about manage. The kitchen, however, is a real killer for me – any and all help there makes me want to weep with joy… Observe which tasks, or chores, are left to the last minute or abandoned part way through – odds are that these are the ones they’ll need assistance with.
P.S. Try to lend a hand before they have to ask – it will make them seem more visible.
3. Listen to reasons.
Those pesky dietary requirements! Always getting in the way of a nice restaurant meal, and transforming food shopping into some kind of mine sweep. Yeah, well I guarantee that your partner’s dietary changes are less to do with Gwytneth Paltrow and more about alleviating their suffering. If you are the one doing the bulk of the food shopping (which can often be the case if fatigue is one of your souse’s symptoms) then really make an effort to understand why they are changing what their body is fuelled with. I was already vegan when I decided to try the ‘Endo Diet’ but I was still met with some resistance from people who thought I was simply being faddy. But, being able to free myself from the medication that was destroying my liver was well worth all the tutting and eye-rolling. Hospital decor isn’t something we should be vying to see, and if making mealtimes a little more awkward is the price to pay, we should be willing to pay it.
BTW, in the UK, allergens are usually listed in bold type on the ingredients list; but if that too is causing an issue there’s a brilliant little app called Can I Eat It which turns your smartphone into a barcode reader, and flags any ingredients you should be avoiding.
4. Remember the spoon thingy…
This is going to sound as selfish as all get-out, but spoons are limited – your spouse may not want to spend all of them on making the house look like a ‘show home’. When your energy is at great risk of being depleted arbitrarily, you tend to prioritise things a little differently. I, personally, didn’t want to be that person that had zero fun, but a pristine home: housework is constant – seeing your favourite actor in an iconic role on the big screen is often time sensitive. I did say that it was going to sound selfish… But, before I became really ill the ‘future’ was something real and tangible – something I could plan for. Now it’s an abstract concept; hypothetical and diffuse. When I watch a movie trailer I no longer look forward to seeing the film, I hope, instead, that I live long enough to see it. That may appear to be a small shift in language (particularly as no-one gets out of here alive) but it does serve as a reminder of the many times, over the past three years, when I really thought I wasn’t going to live to see another sunrise.
This is often a bugbear with people who are well or able-bodied. Those who assume that if their health were to deteriorate they would use their innate awesomeness to become the fittest, strongest, most active sick person ever: battling through all of those symptoms and challenges to conquer the mountain of ill health and disability, and place their flag of courage at the summit. The only problem is that they are well and able, and often have no real idea of what it’s like to live in a body that has well and truly turned against them. With that in mind, try to cut your spouse some slack if they decide to do something ‘fun’ on a day when the place needs a good vacuuming: because spoons don’t always have to be spent on the things that ‘ought’ to be done.
5. If it moves…
A lot of chronic conditions fluctuate – remembering that can save a lot of arguments. There are days when my, much relied upon, Ice Hockey boost only lasts a few hours. It sucks, but that’s the nature of what I’m living with. Unfortunately, that is an issue that a lot people have trouble comprehending – “But you were fine last night!” Often, the body of a chronically ill person is like a faulty smartphone; two hours of Tetris on a half empty battery may have been fine yesterday, but today, that phone is going to shut itself down after receiving two text messages. We know it’s frustrating (particularly when we have to cancel something that was pre-planned) but believe me when I say it’s a lot worse for us. Not only can we not push through and force our bodies to comply, but we’re also left with the guilt of being the ‘damp squib’ who managed to bring illness into the equation again.
I hope to follow this up with the perspective from the ‘other side of the fence’ – showing how life changes when the person you’re sharing your life with suddenly finds themselves living with unexpected illness: but right now I’m going to spend a couple of spoons on Michael Fassbender…
The Martian Princess Chronicles 