Monday, March 5, 2007

Cancer Terminology - "Sufferers", "Victims" and "Carers"

Lucia on her own blog, and quoted by John on NHS Blog Doctor , said

"Obviously, people will come on here expecting to read a heart wrending tale of a "sufferer battling through chemotherapy". I'm not a sufferer, a victim, or neither am I "plucky". Sorry if I don't match your requirements. What I aim to do through my blog and my website is say "Yes, us teenagers do get cancer, so lets face the facts and deal with it". Until now, my blog has been a way of letting off steam. Now it's time to make a difference."

I have been consistently using the terms "sufferer" for someone who has leukemia and "carer" for someone who looks after someone with leukemia. "Victim" is another extreme term used. I, as Lucia, am more and more unhappy with this terminology.

In 1980 when I was eighteen I left home, with relief, to go to university. I started experimenting with my sexuality. The first rumours started comng out of London of a mysterious disease hitting gay men. We didn't think much of it. I spent my second year abroad and when I came back it was a reality, although still unknown. Terence Higgins died. Friends of mine died. HIV and AIDS (let me remind you, acquired Immuno-deficiency syndrome is, in many ways, simiar to ALL) were identified. It was blamed on gay men. But then some haemophiliacs got it through blood donations, then some heterosexuals , and then it was discovered to be a worldwide pandemic ...

And the gay community said we are not "victims". I agree we are people "with" - just like you've got a cold, the flu, dermatitis, acne etc etc

I have asked Lucia, and the YOBS, to talk to me about this but would appreciate wider comments as well.


Lucia said...

We don't like to be thought of as sufferers of A.L.L. and cancer. We like to be thought of as fighters whether the cancer is beaten or not; we are all fighters.

Potentilla said...

I don't like "fighter" either; there has been too much baggage in the past about having a positive attitude being a way to "beat" cancer, with the implied message that if you are gradually NOT beating the cancr, it must be because you aren't being positive enough.

Being as happy and positive as you can is a good thing in itself; but there is absolutely NO evidence that it makes any difference to whether you get cured or not, or how long you live.

I would rather just be thought of as a person who has incurable cancer. I mean, it's just one fact about me, not my whole identity. The thing that makes me really cross is when people tell me I ought to think or do x, y or z because I have cancer. (Always people who don't have cancer themsleves, of course).

"Cancer patient" seems to me to be a good term. It's quite neutral, and the "patient" part refers only to me in respect of my illness, rather than trying to describe my entire identity. (Also the double meaning is good, because patients hav to be patient!).

Angus said...

I didn't pick up on your comment until today. Many thanks.

I do think a discussion of terminology useful - semantics do matter as they shape perceptions. I'm still thinking hard on it and I guess my ideas will evolve.

The "Bunny Rabbit and Angels" brigade I feel don't help as it gives the perception of "victims". Although I do sympathise ... I was hesitant to accept Clare's (quilts4leukaemia) offer of a quilt for Kezia and link to her, I hate accepting /asking for financial assistance now and again from Clic Sargent, I hate seeing massive fundraising campaigns by parents for their child ... all of this stinks of "victim". But out of necessity, have to accept the humiliation.