Years ago I attended counselling sessions for an issue unrelated to Lupus “it’s like you’re in a glass box, looking out on the world”. I didn’t think much of her words at the time, but now they are poignant to me. I was 17 and looking back I wasn’t trapped in a glass box. I didn’t enter a glass box until I became chronically sick.
I think a ‘glass box’ is a wonderful analogy for life with a chronic illness. Illness takes you on a different walk of life, life starts to revolve around your illness: have I put my meds through? Have I taken my meds? Do I have enough pain medication? If I do this, will I suffer? Activities that were once simple are now a burden and some seem impossible.
There is a door on the glass box, but it’s locked and there is no key available. There’s nothing inside the box and despite how hard you try, the glass cannot be broken to escape. There isn’t a soul on this Earth that can open the box from the outside. We are trapped within the box and like my counsellor said “looking out on the world”. We watch people go to work, school and social events. We watch people run errand after errand, watch them push their bodies to the limit in workouts for them to get showered and to move onto new tasks. We watch people do normal daily things that would break us, on particularly bad days the smallest of tasks can feel like climbing Mount Everest.
The glass box can be a lonely place, you’re trapped inside on your own but you can see and talk to people. You try to explain what’s wrong with you, how you’re feeling but to no avail. Nobody around you is trapped and they cannot enter to gain an understanding. You’re left with a lot of alone time, time often spent thinking about how your life was before you became sick and trapped. When you’re left with time to think, it often leads to frustration because you miss what you used to be – you miss being busy and active without a care in the world. There was a time you were watched from a glass box by an envious chronically sick person.
You start to accept that there is no way out and you learn to adapt to your new life. I’m starting to forget what my life was like before Lupus, most things have started to blur. I can’t fathom how I lived and got through my days, and that’s because it’s not normal to me anymore. Getting through a painful day, putting medications through and keeping track of hospital visits is now my normal. Some would find it sad that I’m starting to forget how I lived before I was sick, but to me it’s not important, if I remembered I would dwell on it and that would be detrimental to my emotional well being.
The Glass Box to me symbolises my own body and illness, boxes are unique to each person suffering a chronic illness – even if that illness is the same as mine. Before I accepted my new normal I looked out to those busy people from my glass box and thought of them as super-human for doing normal daily things. From the outside looking in, it looks like I don’t do much at all. The reality of that is I battle my body daily, my own body wants to kill itself and everyday I experience pain in every part of my body. I am weighed down by fatigue, because my body is tired from pain and from fighting itself. Accepting that I was sick with an illness that can’t be cured wasn’t easy and it took me a while but when I finally did, I realised its us, who battle themselves everyday that are the super-humans of the world.