Lately, there’s been a rash of memes, posts and comment threads from people in various social media support groups for autoimmune diseases talking about their ‘chemo’. Then recently, a member of a group I’m part of posted a question to our group about what group members think about the people who, when told about OUR diagnoses, make comments like, ‘well, at least it’s not cancer’. I’ve even seen odd comments in some places where people with an autoimmune disease have said they wished they DID have cancer instead of RA, or Lupus, or any of the others – their premise being that then, at least, there’d be more awareness and sympathy.
When I was a kid, we moved around a lot. My father was in the merchant navy until he was invalided out – which was when he met my mother – so he used to get itchy feet. Among other things, I don’t have a cadre of friends that go back to my childhood. Consequently, my lifelong friends date from my first years at university.
I live in Sydney, on the east coast of Australia, where I was born. But my father’s itchy feet took us to South Australia when I was 10, and I went to university there, in Adelaide, its capital city. I moved back to Sydney ten years ago. A couple of months ago, I had a trip back to Adelaide. I try to get back there as often as I can, which hasn’t been much of late. This trip wasn’t the usual kind of trip though. I went specifically to visit one of those uni friends, a woman I’ve been close to since we were seventeen.
About eighteen months prior to this trip, she had called me when she was first diagnosed with RA. I remember how sad and angry I was for her then. She was always a super sporty, active type. She was the one who dragged an unwilling group of us out onto the uni tennis courts on sunny afternoons, and always wanted company for walks by the river in breaks between lectures and rehearsals.
With her usual positive mindset though, she refused to let the diagnosis get to her. She faced up to the rounds of tests and experiments with different drugs as she and her rheumatologist looked into the best treatment options. I saw her at the end of last year when I was in Adelaide, and she seemed to be on track with a good rheumatologist.
However, by the time I saw her a couple of months ago, her doctors weren’t bothering to treat the RA any more. Earlier this year she was diagnosed with a rare and aggressive form of ovarian cancer. Initial surgery saw a massive tumor removed and the beginning of chemotherapy. Subsequent events have seen her in and out of hospital, struggling to fight what is clearly going to be a losing battle. She’s currently in the hospice section of one of the city’s hospitals – chosen by her doctors and family so that the family can bring her dog in regularly when they visit.
As my dear friend has become sicker and sicker, I’ve found myself getting angrier and angrier at the comparisons on social media between RA and cancer, and especially when those with autoimmune disease talk about their ‘chemo’.
So, about the chemo stuff… According to a few definitions I’ve looked at, chemotherapy is:
[the] treatment of disease, esp. cancer, by means of chemical agents (Collins Concise English Dictionary)
So, by THAT definition, it seems to me that pretty much any treatment of any disease via some kind of chemical drug is, technically, chemo. However, I think the understanding of the general public when they hear that someone is having chemo is that it’s huge quantities of toxic drugs with massive, nasty side effects to treat cancer – specifically. That’s what the majority of people seem to think if you say ‘chemo’.
Some of the drugs used to treat RA and other autoimmune diseases WERE cancer drugs originally, just as some were originally used to treat malaria, or something else. As my rheumatologist explained to me prior to starting me on one of these drugs, the major difference is that the doses we’re prescribed to treat our autoimmune diseases are, by comparison to those prescribed for cancer, miniscule.
Similarly, with the exception of a tragic minority, most of us with autoimmune diseases can hope for – with the treatments now available – a reasonable quality of life that will last long enough for us to see our children grow up and beyond that.
My friend won’t have that. Despite the best efforts of her medical team, and her own incredible attitude and fight, she is dying. Her youngest child is still at school. She’s the rock of that family, as her husband has a number of chronic conditions. Her chemo is not beating the cancer. She is bedridden, painfully thin, bald and unable to eat at all.
MY ‘chemo’ gives me headaches for a few days, and a couple of other irritating side effects that, honestly, I could do without. But it’s not the same. It’s not the same at all. I’m not bedridden. I can eat. I’ve lost some hair, but no one who didn’t know me before would know that. It’s given me a better quality of life than I had before I started it. Because of that, I can’t, in all conscience call it ‘chemo’. And I don’t. It used to irritate me when I saw other people posting, and making comments about their ‘chemo’. These days, in the face of what my friend is enduring, I’m way more than irritated. It makes me furious.
I know that everyone has SOMETHING going on. Some of us are sicker than others. Some of us have more on our plates than others. Some of us have differing levels of support from friends and families. BUT…most of us have our lives. The drugs we have available, regardless of the side effects, enable most of us to experience improvements at various levels – medical remission, even, for some fortunate individuals.
I also get that people want to have some way of emphasizing that RA and other autoimmune diseases are serious illnesses. But using a term that the general public equate to cancer treatment for autoimmune disease treatment isn’t the way to do it. I believe there can be no real comparison between cancer and an autoimmune disease. And equally, the treatments are just NOT the same. If someone with RA is given a drug that is used with cancer patients for chemotherapy, for me this is not undergoing ‘chemo’.