I’ve been spending a lot of time on social media at the moment, mostly because I’ve been having a lot of PJ days and forced rest. It’s quite easy to get sucked into clicking on hashtags and different Twitter users and some of the random things I’ve been coming across have been other people with chronic illnesses or chronic illness blogs. Some I find interesting to read, others I find a bit annoying. The same phrases seem to come up a lot, and they’re not ones I tend to use. I’m not saying other people shouldn’t use them, I’m explaining why I don’t like them.
‘This has ruined my life’
The most recent blog I read was called ‘Depression has ruined my life’. To me this sounds really drastic and final. It also suggests that whatever came before in your life isn’t noteworthy, even if it was, and sounds like you’re writing yourself off forever more and won’t achieve or do anything else. Our lives are what we make of them, and life is never uneventful for anyone (NB, I’m not saying ‘that’s life’ because that’s an equally annoying phrase!). Illness might not be fair and it can be bloody hard, but that doesn’t mean life suddenly has no meaning after diagnosis and is ruined. My point is, while we have an element of choice, even if our choices aren’t as broad as we want them to be, we can do something about whatever it is that might ‘ruin’ our lives. Life might not be what we planned, but we’ll get more out of it taking an alternative path than sitting down and declaring ‘this has ruined my life’. Depression might change someone’s life and can be really unfair (this is just an example by the way, not a passive aggressive dig), but, if you think about it, we’re not born into a rainbow and unicorn filled perfect world with a pre-destined path lined up for us. There are, of course, exceptions- some illnesses have drastic and final consequences.
I saw this photo on Facebook and it makes a lot of sense. If you compare your life to the perfect one you planned out, it’s never going to live up to your expectations.
Someone said to me once ‘I hope my child doesn’t have asthma because I don’t want it to ruin their life like it has yours’. Excuse me? She made it sound like a death sentence if her child was asthmatic. At that point, I was really healthy and could run 10k. Even when my asthma was uncontrolled, I wouldn’t have said it ruined my life. I asked her what she meant and she said because I required daily medication and needed to manage it it had ruined my life and was holding me back. I obviously disagreed- holding me back from what? Daily medication isn’t that big a deal. I wonder what that same person would say now I’ve got Adrenal Insufficiency!
‘I suffer with….’ or ‘ X suffers with…’
True suffering is rare in this country. Famine, war, poverty, abuse, terminal illness are all things some people suffer, but the majority of us won’t. However, suffering is relative to what you’ve experienced previously. So someone who has only had colds in the past will feel like the flu is the worst suffering ever. But the thing with suffering, is it’s partly the way we perceive it that tells us how much we suffer from something- the thing itself might not be ‘that bad’. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and suffering you place on it will be less. Why do you have to say ‘I suffer from asthma’ when you could just as easily say ‘I have asthma’? I have daily, unpleasant and debilitating symptoms but I wouldn’t say I’m constantly suffering. You get used to what you have to an extent and some days are worse than others.
For example, I really hate vomiting (most people do), but it can be really dangerous for someone with AI. When I felt sick, which happens a lot, I used to get myself in a massive panic about it, which made it worse and then made me dread the next time it happened even more. I worked out that if I got rid of the commentary in my head, I still felt sick, but I didn’t suffer as much or for as long.
Some people with chronic illness have severe or serious versions of their illness. But some people with chronic illness add the word severe themselves, as in, it’s not a term given to them by their doctor. Again, this might be because of the ‘illness is relative’ point I made above- if everyone else around you has mild, seasonal asthma and you have a few asthma attacks a year, you asthma is more severe than theirs’. But it doesn’t mean you have ‘severe asthma’. However, I reckon the only reason people do this in the first place is because they’re trying to make the point that their condition is worse than someone else’s e.g because they desperately want someone to take them seriously rather than dismissing them or because everyone seems to have a habit of trying to ‘outdo’ each other and the person is trying to make the distinction between their condition and ‘normal’ conditions- and I can completely understand why it happens. For example, if I say I’m tired, someone nearly always says ‘oh yeah, me too.’ They might be tired, but their tiredness isn’t comparable to mine. If I were trying to make that point I might say ‘I have severe tiredness/fatigue’ to try and make the distinction. The problem is, this then means that people who do have severe versions of illness are put in the same category as people with less severe versions of the illness and have to find another way to make the distinction! Without realising it or intending to, it’s become some sort of competition. If someone tells me they’re tired too, I try to inwardly roll my eyes and let it drop rather than getting into some sort of debate.
I personally don’t like the word. Lots of people use it to refer to someone who has a chronic illness as a way of encouragement, and that’s up to them. I don’t like it because I think it causes a lot of pressure for one thing, but also because it brings out the competitive nature in people. If you’re having a bad day and you’re not soldering on, does that mean you’re not a warrior and you’ve failed? It shouldn’t, because everyone has bad days. But if you see other people being named ‘warrior’, it’s a hard label to live up to. How do you even get called a warrior anyway? What do you have to do? Is it the person who has the worst symptoms (or suffers the most) or the person who achieves the most despite illness? And then the competitiveness starts. Or is everyone who has a chronic illness a warrior? If so, why? I’m all for encouragement, but the word makes me uneasy. I think it’s because it implies that you’ve always got to be fighting your illness or disease. Sometimes it’s ok to not be ok.
This word is huge in the chronic illness world. A woman developed the Spoon Theory to help explain how she manages chronic illness to a friend. She happened to have a lot of plastic spoons in front of her in the diner when she explained it, so it became known as the Spoon Theory, and people with chronic illnesses are known as Spoonies. It’s a good analogy, but it doesn’t work for every illness. It’s great to have a sense of community and to have other people to turn to, which is why it took off. Reluctantly, I occasionally use the hashtag on twitter, because it means I can find people who have similar illnesses to me. The reason I don’t like it is I haven’t worked out yet if it’s a word universally used or if it’s only used by people with chronic illness. If it’s used by disabled and non-disabled people to refer to those with chronic illness, then that’s fine. If it’s a word only used by disabled people and non-disabled people aren’t allowed to use it, that’s not fine. It’s a bit like when groups use derogatory terms to refer to each other, but call other people from other groups racist/homophobic when they use the same word. It can’t be used in solidarity in one breath and considered an insult in another, is my view.
I probably spend more time than the average person thinking about words and phrases because I studied languages at university. I’m not saying any of these terms are wrong, I’ve just come across them a lot in my random trawling and thought I’d explain why I try to avoid them on my blog!