A big point of comparison seems to be, well it could be worse, you could have cancer.
I know people with cancer go through a really rotten time, but I don't know that their really rotten time is worse than ours.
For example, people who take chemotherapy drugs for cancer usually do so for a limited time. A cycle of a week on and a week off for a couple of months - something like that. I've been on methotrexate (a chemotherapy drug, also used for cancer) for years now, and cannot foresee a time when I will not have to take it every week.
One of the standard treatments for cancer involves cutting out the cancer - actually removing the disease, and then using radiation and chemotherapy to make sure there is none of it left.
With lupus, the disease is in the immune system - which is throughout the entire body. Cutting out the diseased part is not a possibility - because every part is the diseased part.
I've had cancers twice. As an infant, I had a spitz tumour on my face (there's a scar near my left eye from it). I don't remember it, but my mother has told me that it was terrifying to have a growth constantly getting larger on a baby's head, and it was difficult to find a surgeon who would take it out. But eventually they did find a surgeon, the tumour was removed, all of it, and although it had spread a bit, it had not made it as far as my brain, so all was well. The other cancer was only a couple of years ago, it was a basal cell carcinoma on my nose. (Yes, if you're going to get a skin cancer, the place to have it is right in the middle of your face.) My GP blames my lupus drugs for causing this one - although my rheumatologist says it wasn't caused by them at all. Again, it was cut out. My nose now has a strange shape, but that's the only lasting consequence.
Not all cancers are as simple to cure, but quite a few are. They are localised to one place and can just be cut out. You can never just cut out a person's immune system.
There are a lot more awareness campaigns about various cancers, which means there's more research being done, and more support available for people with cancer. Most people have heard of leukaemia or breast cancer - they're not as common as lupus, but everyone knows about them, and lots of people give money to help research a cure.
Like cancer, lupus can and does leave people disabled, and even kill people. They're both horrible diseases, that no-one would ever want to go through.
So please, if you know a lupie, don't make light of their suffering. And don't say something as offensive as "Well, it could be worse, at least you don't have cancer."
While you're here, please copy the image at the right, and post it in your Facebook, Google+, Twitter, Pinterest, everywhere you are on social media. Or just email it to your friends.
People living with a chronic illness often find our ability to earn an income is limited. I'm trying to get a campaign started (with no budget, of course) to encourage people to buy at least one Christmas present from someone with a chronic illness.
The Business Directory is full of businesses run, often from home, by people with chronic illnesses. Buying from any of us helps to manage the cost of living with a chronic illness, and can go towards the dream of being financially independent.
If you have lupus or another chronic illness, and have a business you'd like included in the directory, email me email@example.com with the details. Listing in the directory is free.