Chronically Ill Kat

“There is something about everything that you can be glad about, if you keep hunting long enough to find it.”  ― Eleanor H. Porter, Pollyanna

Believe it or not, in many ways I am very thankful for having an illness. Don’t get me wrong, I feel I’ve learnt my lessons now and would certainly not say no to a miraculously recovery, but there are so many things that I have learnt from becoming chronically ill. And one of those things is to appreciate life and all its weird and interesting quirks. This is a skill that many of us with chronic illnesses have taken years to learn and perfect, but in a time when a lot of people’s worlds have been made forcibly smaller because of corona, I am really glad that I was able to learn this lesson slowly.

The Glad Game

I think I have always had the tendency to look for the joy in things. Growing up on books like Pollyanna you can’t help it. For those who have not read Pollyanna, it tells the story of a little girl who, after losing both her parents, moves to live with her stern aunt in a new town. In this town she starts to make friends with all sorts of people and ends up brightening their lives and teaching them how to find joy in the small things around them. It’s all very lovely.

The way in which she shares joy is by playing the glad game, and by encouraging everyone else around her to play the glad game too. The glad game is a game that her dad taught her because they were very poor and all of their belongings came in big charity barrels. All Pollyanna really wanted was a doll, but dolls never seemed to be donated to them. So, once when only a pair of crutches arrived in the barrel, her dad made up the game that every time a barrel came they would find something to be glad about. And then the game grew into finding something to be glad about in every situation; the harder the situation, the more rewarding to find something to be glad about.

When I was younger, I secretly played this game a lot, and when I was feeling sad I would try to be more like Pollyanna and try to find something to be glad about. When I became sick, this became a lot more challenging, because I could not help but miss the things I used to be able to do. But as I said before, the harder the situation the more rewarding the outcome. So, over time, and with lots more practice, I have learned to be glad about things very naturally, without really even playing the glad game any more. I guess it became part of my coping mechanism for all sorts of things. 

My world shrunk

When I became chronically ill, my world shrunk considerably. Instead of being involved in all sorts of projects, flying around the city on my bike, and meeting all sorts of people, I spend more time at home. I now spend a large amount of time in bed and, especially since coronavirus, meet very few new people in real life. In fact, I do very little but in general I am quite content.

Of course I am not always content, and sometimes have days where I want my old body back, times when I just want to do something exciting, and times when I feel like everything is rubbish. But most of the time I am fairly content. And I think I can put that down to the fact that I have learnt to find the joy in all sorts of small things – joy where people who live a faster pace of life perhaps would not find it.

When your world is your house, or your room, or your small neighbourhood, I think it forces you to really look at what is around you, take it in and appreciate it. When there isn’t really the option to look further away for excitement, you have to learn to find it and create it where you are. Whilst I have learnt this skill, over time, through being sick and not getting out much, many people are now being forced, because of corona and its associated difficulties, to look closer to home to find contentment. And learning to see and appreciate what is around you is a very useful skill to have.  

Trips out of my house almost always feel exciting

Now that I do not leave the house everyday (we are talking pre-corona times as well), I find that almost any outing from the house is exciting. I was talking about this with my partner the other day, and we realised that we have, over time, began to blur the boundaries between logistical tasks like doing the groceries or going to the pharmacy, and fun outings, like going on a nice walk, etc., and that is mainly because of my limited energy.

When you can only make a certain number of outings or use a certain amount of energy in the week, you have to make decisions as to how you will use that energy. So, in order to enjoy life more, we have got very good at feeling like necessary tasks are in fact fun outings. And when, recently, someone offered to take us to the hardware shop so we could pop in and pop out quickly, we declined, much to their surprise, because we had both been looking forward to the outing! I think they struggled to understand why we would want to take our time over the process.

Lots of small joys

In a time like this, many people are struggling, and to be very real with you, I am too. This year, for me, has involved a lot of things in my personal life that are difficult to deal with – without corona making it harder. And being a disabled/more vulnerable person during corona times adds an extra special level of difficulty, because not only have I not had respite from isolation since March but, every day, the media, social media, and even people I care about, talk about the worth of disabled people, recommending keeping the vulnerable in so everyone else can get on and live – showing the general lack of worth people think disabled lives have.

Appreciating the small joys is something to be glad of, in and of itself. I have learnt that I can cheer myself up with small acts of joy, or small realisations, even from some of the worst situations. Alongside this, sending and receiving small gifts in the post, and little postcards or nice messages is an endless source of happiness. Being a part of the chronic illness social media communities, watching and celebrating everyone’s small achievements, making new friends, and having lovely conversations online, have been small joys that have given me a huge sense of living, and made a very unbearable year bearable. Learning how to appreciate these joys is something that chronic illness has taught me.

And, not to gloat, but I notice that I am often more able to feel fulfilled by these small things, than people who are living fast-paced and exciting lives. I suppose it is what you are used to. I have grown used to the granny life and have learnt to love it, whilst still having plenty of space to appreciate and enjoy adventures, should they come my way – which at the moment, during corona, doesn’t seem so very likely!     

Toxic Positivity

Very importantly, when I play the glad game, I do not exclude the need to have negative emotions. I find it very important to allow myself time to feel sad and negative about life; there is a lot going on and sometimes a good cry or an angry rant in my journal is exactly what I need to process my emotions. And this is absolutely normal and good, especially in tough times. Emotions, whether they are positive or negative, are just emotions, and are trying to tell us something, so I find feeling and understanding them important. Trying to block out the negative emotions with a ‘positive vibes only’ attitude can also be incredibly harmful, so it is something I try to avoid.  

That being said, I do feel that playing the glad game has given me some sort of control over my emotions, or at least the ability to pick myself up when I am down, and to really appreciate everything that I do have. Instead of looking for silver linings in comparison to other people – saying things like ‘well at least I have enough to eat and not everyone does so I should be grateful’, the glad game has taught me to appreciate things for their own sake, which removes the comparative, guilt-tripping aspect, and allows me to pick myself up in a more positive, natural way.

My chronic illness doesn’t make my life tragic

Often people with chronic illnesses and disabilities are seen as tragic cases, and it is assumed that they must be sad and unhappy. Yet sometimes I look around at the non-disabled people I see, and feel sorry for them: how little they appreciate the great things in their lives, and how seldom they see joy in the small things. Since becoming disabled, I have come to appreciate a whole plethora of things that as a non-disabled person I was unable to. And then I can’t help but feel that chronic illness, horrible as it is in some ways, is a great teacher, really showing you how to find contentment in the smallest things – even though it sometimes takes a while to realise it.

“You see, when you’re hunting for the glad things, you sort of forget the other kind.”

― Eleanor H. Porter, Pollyanna