Sarah Bailey lives with multiple chronic health conditions. Today, she reflects on what she's learned over the last eight years and those lessons have affected her daily life.
Chronic illness can change everything. Often, it changes what you can and cannot do. Sometimes, it may feel like it even changes who you are.
It can distance you – not just from the world around, but also from the people in it. Friends may disappear from your life and while this is hard, you must remember: if they can’t deal with ill you, they were most likely not the best of friends in the first place!
While chronic illness sends your world into a spin, there is a lot to be learnt from it. With hard work and a bit of luck, it can even improve your perspective on life. You end up adapting and learning to take things one step at a time. In that process, your illness can teach you:
1. To enjoy the little things
It is easy to overlook the small joys that happen around us every day. From a friend making me smile to a compliment from an acquaintance – as someone with a chronic illness, these become even more noticeable (perhaps because a lot of my time is spent staring at the same four walls).
Those little things become big things that can change your day from difficult to amazing.
I found great joy in snuggling with the other half and the dog while watching a movie, or spending quiet time in the garden. It really is the little things that matter!
You have to learn to accept the change in your life. You’re not going to wake up one day and accept it all, but slowly you will get to know these differences and accept what you can and can’t do.
Sometimes you just have to stay in bed, and sometimes you need to get out and about.
For me, it was hard to accept the smaller things, such as not being able to fill the washing machine or make a cup of tea. It drove me to tears that everyday things at times become undoable.
3. To adapt and change
As I’ve said in the beginning of this piece – your whole life can change when you’re diagnosed with a chronic condition. This means you will have to adapt and change with it.
Sometimes those adaptations mean using devices to help you around the home, sometimes they are coping techniques you find for yourself.
My bathroom adaptations such as railings and a bath board mean I can shower. In the kitchen I have a perching stall that allows me to do chores – as long as I listen to my body and stop when I need to.
4.To not take things for granted
We all take things for granted.
I took for granted that all I needed to be able to see were my glasses. However, my Keratoconus took away the ability to see with glasses and I had to adapt to wearing contacts. I longed to have the days back where I could just slip on a pair of glasses and see.
I still struggle with the contacts due to the pain they cause, but at least they enable me to see. I am not taking that for granted again!
I’m also not just talking about physical abilities. There are other things that we take for granted, such as spending quality time with friends and family. When you have a chronic illness, you quickly learn to prioritise and put things that matter most to you first.
5. There is strength within you
There are days when won’t be able to get out of bed and all you will want to do is cry. That’s OK.
But there is a strength in you. You might not even have been aware of it, but it is there. It will help you push through each day and over the new hurdles you have to jump.
I’m still not sure I’ve completely found my strength, and I know some days it deserts me. Sometimes I feel I have run out of everything I had to give. Those days I try to be kind to myself, and guess what? Mostly I do manage to get up and go every day!
6. Have compassion for those around you
People sometimes roll their eyes when they see someone step out of a car in the disabled bay. They might wonder whether you have even “earned the right” to park in that bay.
When you have an invisible illness and know what it feels like, you will understand that someone who might look OK on the outside is fighting a battle on the inside. Your own journey will help you understand the plight of others, and you won’t dismiss what they say just because you haven’t been there.
I try to always have an ear for someone who is struggling and needs a few kind words, even if it’s just “I’m here” and “I care”.
7. Not everyone will understand, and that’s OK
When I first got ill, I wanted to scream at those who didn’t understand. I wanted to yell I’m not lazy and I’m not crazy!
Eventually I learnt that not everyone wants to, or can understand.
Worrying about the people who didn’t try to understand would just be wasting my energy on people who didn’t care anyway and who weren’t going to change. The best thing to do is just to move on.
Let go of people who aren’t interested to see your viewpoint and focus your efforts on those who do.