It took a lot of work, and quite some time to come to terms with the fact that the goal of my treatment is not to fix a problem, but to help me cope with it – live with it. Before I realized the chronic nature of my condition, when I thought my life ahead of me, I did not imagine my illness would be a constant. Dreams don’t usually come with illness. It’s a tough thing to process what this means, not for only for me, but for every person involved in my life. Eventually I realized the way I could cope with chronic illness required a set of attitudes, rather than a to-do list of specifics.
A particular symptom may crop up, but it’s the context in which it surfaces that really determines how I will cope with it. Many things influence context: the time of year, the place, people who are around me or not around me, what plans I need to change, and so the list goes on. In my case treatment must always take into account symptoms and context.
However, there are a few attitudes that will always steer my mind to a place which contribute to my process of coping. Here are a few of them:
I know there will be tough times as well as good times
Acknowledging the chronic nature of my condition enables me to realise that when we have managed to effectively treat a symptom, in time another will occur. Perhaps it sounds morbid and negative. But for me it serves as a reminder to always appreciate good days. To take the time to immerse myself in them, to make the most of the times my body is able to enjoy the things I can’t enjoy when symptoms surface. This helps me to be present and not get stuck in a cycle of anxiety about what may lie ahead.
Tough times never erase all beauty
In this instance memories come to mind. Of course I have a massive mental data base of illness-based memories, but I have a bigger data base of beautiful memories too. Some of them are memories of momentous things or moments in life. But memories of laughs shared with friends, hugs received from loved ones, beautiful music, past sunsets and sunrises, those are the everyday memories that bolster me, that help me remember I’ll always be able to make more of those memories in the future, as long as I’m present enough to notice those moments in life.
I make time to notice beauty in nature – it’s everywhere
When tough times surface, I try to never forget that the world is bigger than my experience of myself. I ‘look up’, and every time I do I see something beautiful. From my bed I look onto a creeper covered banister. It’s a favorite place for lizards, ladybugs and birds to hang out. To watch them and their antics forces my mind to focus on beauty. Tiny things can be beautiful. I also love watching clouds change shape. It’s as if an artist is painting the sky right in front of my eyes. None of these things demand anything from me. All I need to do is look up.
Chronic means ‘long time’ – there is no quick fix
This attitude helps me to not fixate on treatment. I trust my doctors, and I trust myself to know if something new or alternative surfaces we will consider it. However, preoccupation with fixing my illness can become all consuming. It becomes something that detracts from appreciating the beauty of the present. It also creates a thinking pattern that is centered on illness instead of centering on the fact that illness is simply part of me, it is not me.
My illness is a burden but it is a profound teacher too
It is an attitude that I am very conscious of. Chronic illness requires one lives within one’s limitations. It takes practice and skill to do that - to know what my limitations are, and to feel confident about how freely I can live my life within those boundaries. I’ve learnt embracing boundaries and not fighting them leads to a much happier, productive existence. However, this awareness has forced me to learn patience, persistence and build stamina. Learning when I can go for something, or knowing when I need to step back has enabled me to build a confidence, I never thought possible. For that I’ll always be grateful.
Living with a chronic illness is not something anyone would choose. But I am so much more than my illness. Everyday I acknowledge my illness and take stock of my limitations. But I try my best to not let it own me. Whenever I can, I use my experience to help others. If my experience and learning about my illness helps just one other person, all the effort is worth it.
Always look up.
Alice
Comentários