Yesterday I had my sixth infusion at the hospital, I sat in chair number 13 (which is more often than not the chair I get allocated because no-body else seems to like to sit in it, but it doesn’t bother me). My infusions seem to fall on important days – my first on my mum’s birthday, my fifth on my best friend’s birthday, my sixth on my gorgeous girlfriend’s birthday and next months falls on the day of the Coldplay concert I bought tickets for months ago (even though I knew it was unlikely I would be well enough to attend). The ward at the hospital I go to for my infusions is an interesting place. I am the last person to start their infusion on Tuesday, so when I arrive everyone else is sitting down. The big mechanised chairs are occupied by ‘normal’ looking people hooked up to hanging bags of medicine. There is a board that sits in the middle of the room with our names listed on it, followed by a medicine that is often too difficult to pronounce. I know there is one other person on the same medication as I am, but I over heard a few infusions ago that they were on it for Rheumatoid arthritis. Sometimes I wonder whether there is anybody else with Still’s disease who also visits – but it is probably unlikely.
I often don’t speak to anyone other than the nurses, but yesterday I asked the lady next to me how many infusions she had to go. This simple question led to an extended conversation, naturally ebbing and flowing between topics but often returning to how our conditions affect our lives. I discovered that she had been suffering from MS for over twenty years. She told me that for 10 years she didn’t tell anyone about her condition. This is something I know a lot of people with invisible illness do (illness that are not always apparent), they quietly suffer, trying to hide the truth that their body has turned on itself from the people we affectionally refer to as the ‘normals’. She felt safe confiding in me, a stranger, because like her I was also hooked up, dependant, on a medication that hung above my head.
My journey has been very different to hers, my condition has been very public. However, I know there has been times recently when I have hidden my illness, dodging the question asked by new acquaintances about ‘what do you do?’. Replying I work full time at getting better and advocating to my body that it doesn’t need to attack itself doesn’t seem like an adequate or desired response. I think people with invisible illnesses hide their condition from people because they don’t want their illness to define or dominate another part of their life. They see hiding their illness as an opportunity to be considered ‘normal’ for just a moment. But sometimes getting better isn’t always easy.
Sometimes I ask ‘why me’, not why did I get sick – this is something I haven’t really struggled with but rather why do I get the opportunity to get better. Since starting my new medication I have made dramatic improvements, but sometimes this seems unfair when I know there are people around me who have been suffering more intensely and for longer than me who don’t seem to get the ‘breath’ that I have been granted. It is during these times that I have to challenge myself to do something with my health. To stand up and strive to be an encouragement. I remember feeling the heart ache of the lady sitting next to me as she described how MS had affected her life – a veteran of illness maybe shattered with the knowledge of what my future might look like if my illness persists. At this stage it hadn’t really struck me how much MS had impacted her life – two sick individual’s sitting down, connecting on a purely emotional and intellectual level neither of us really aware of one another’s true condition. My heart sunk when she struggled to stand up, crippled by her MS she painfully left the room when her husband arrived.
In that room, when we’re all sitting down, we’re equals. We are the normals for just a moment.