I’ve purposely taken that out of context because I really want you to keep reading. Clickbait and all that.
The question I’m actually referring to isn’t just a question. It’s the question. The one people like me get ALL THE TIME. It goes something along the lines of: “What have you done to your arm?” There are variations on this of course, including, but certainly not limited to: ‘What have you done to yourself?”, “Why do you wear that?”, and, my personal favourite: “What’s with the… [hand gestures in the direction of my swollen arm in a compression garment]?”
I’m not going to make you read the whole article to tell you that I suffer from a condition called Lymphoedema. For the etymological nerds out there it’s ‘lymph’ (lymphatic fluid) + ‘oedema’ (swelling). Put simply, I have swelling caused by damage to my lymphatic system. You can be born with lymphoedema or, like me, you can get it through damage to your lymphatic system. Like many other cancer survivors, mine was a result of my (very necessary) treatment. Lymphoedema is not life threatening, but it is chronic and there is no cure.
So why don’t I answer honestly? Partly because people aren’t really that interested in the answer (unless it comes with a good story), partly because people’s eyes glaze over with the explanation (because it isn’t that much of a story) and partly because it’s really none of their business.
Any person with a disability or impairment, particularly a lesser known one, will tell you that it’s exhausting having to explain your condition to people who often ask just out of curiosity. Remember, for people with lymphoedema they’re likely to be sore or uncomfortable, extremely hot in a compression garment that is literally designed to squeeze fluid out of your body part, and more than a little self-conscious, especially if they were asked about it because someone saw that one limb was larger than the other.
The reason I chose to answer that question honestly this time is because it’s World Lymphoedema Awareness Month. I’m doing my bit to raise awareness (even if it takes the fun out of the question!) and money. Despite lymphoedema affecting approximately 20% of cancer patients (the numbers are much higher for some cancer types), there are many barriers to accessing treatment. With some areas having no publicly funded services, and with no Medicare item number, some people only get specialist help when their condition has deteriorated to the point of needing emergency treatment. $100,000 is needed for a dedicated helpline, so everyone affected by lymphoedema can access compassionate, reliable and professional support.
Please donate if you can. If you can’t, then look out for the landmarks that will be lit up in blue in March and post your pics with #shinealight Or, at the very least, you can email me your wittiest response to ‘what have you done to your arm?’ I’ve done the ‘offensive tattoo’ excuse to death, and I could do with the entertainment.
To donate, please visit: https://www.mycause.com.au/p/340165/lymphoedema-support-phone-line