Monday, November 02, 2009

Keeping the wolf from the door

As someone who copes with a chronic disease herself I am interested in the language people adopt when speaking of their own or other's illness. Over the summer there was a lot of discussion on this subject with respect to the descriptions of Jade Goody and the cervical cancer that caused her early death. The media adopted the language of war: Jade was 'brave', was 'battling'; she 'fought the cancer', and was 'shell shocked'. These are common terms when speaking of cancer; in particular it is noticeable that the possessive pronoun tends not to be adopted with cancer, in contrast to other diseases. People rarely talk of my cancer, whereas they will own some other conditions - my diabetes, my asthma, my eczema. Perhaps this reflects both the sudden onset or at least discovery of cancer, coupled with its life-threatening capacity (although many other chronic conditions are life-threatening, it is true that thousands of sufferers live out full lives).

Cancer is perceived as the enemy above all other life-threatening conditions, and the language adopted is therefore the language of alienation. Cancer is the Bogeyman, the monster that lurks under the bed; it is strange, it is bizarre, it is unknown, it is unpredictable. It is Other. Sufferers use this idea to visualise the cancer, to gain mastery over it in a way that is not done with other conditions where the link between the psyche and the physical has more convincing proof. It is the cancer; it is not my cancer, for to admit as much would be to allow cancer a foot in the door. Yet cancer above all health defects has its origin in the human. Cancer is our own cells, dividing normally, but forgetting to stop. Cancer is termed aggressive, yet the processes are the same as that required to initiate and sustain life. Cancer is imagined as a terrorist, waging guerrilla warfare inside our fragile bodies; yet cancer is often of our own making, quite literally at the cellular level and also through our insistence, despite all our knowledge of the evidence, on exposing ourselves to environmental conditions, diet and toxins that are inconsistent with healthy long-term cellular processes.

When I am talking to dermatology patients about self-management of their condition I avoid personalising the diseases. I talk of their skin, but the eczema, the psoriasis. Even this is misleading: how can it be their skin, when even the normal epidermis cell sheds and is reborn every 28 days, and the psoriatic skin cell turns over in just 4 days? I too do not like to talk of my disease, my lupus. Yet this disease, like cancer is in many ways of my own making. Systemic lupus is autoimmune: all my symptoms arise from an immune system gone into overdrive, creating a cascade of chemicals that form large complexes. These circulate and cause inflammation in joints, in skin, in blood vessels. The triggers are suspected, but not known. Sunlight exacerbates, but is probably not the initiator. Viruses and hormones are more heavily implicated - indeed, my symptoms started when I was pregnant second time around. Of course, I don't blame the child; but neither do I take responsibility for the disease myself. It is Other. It is The Enemy.

And yet...the battle waged when dealing with a life-long condition, that is potentially life-threatening, is exhausting. I take pills every morning, and have done for 6 years - and will do for the rest of my life. I take pills to protect me from the pills. Every time I feel under the weather, I wonder if a flare up is coming. I get my bloods checked, I attend hospital appointments. Options are reduced. Travel is more difficult. Sleep can be elusive. Plans must be held lightly. Sometimes I adopt an attitude of seeing lupus as part of me, integral, and wonder what life would be without it. I have learned much about myself, and been forced to lean on others. I have probably - although it pains me to admit it - become a nicer person, because of lupus.

Perhaps it is my disease, after all.

1 comment:

blue hands said...

I was intrigued by a distant relative who used the personal pronoun in relation to her weight gain - "when I gained my weight, after my hysterectomy..."

You're so right about the battleground language used about cancer. Strange isn't it? No-one talks about "battling" with arthritis or "fighting" heart disease.

And I never quite got my head round the fact that my mother's brain tumour was "benign" (ie not an "aggressive" cancer), even though it eventually killed her.

You have my best wishes and admiration for living so gracefully with the wolf.