I have lupus and it sucks. It really does. But I don’t have it nearly as bad as most lupus patients. I am a mild case. I manage to have a full-time job, a social life and fantastic support from my family and friends. Today I urge you to find out more about lupus. Read about it at The Lupus Site, Web MD, Lupus UK, St Thomas’ Lupus Trust and London Lupus Centre. Pass on those links. Talk about it. Stop this from being the disease that no-one knows or understands.
I was diagnosed with lupus three years ago. The blood tests were conclusive (something that is not always the case) and the huge relief at finally having a name for the mysterious ailment that had been troubling me for over a year soon gave way to nervousness at being diagnosed with something I knew nothing about. At the rheumatology clinic I was handed a slim leaflet produced by Arthritis Research (the two diseases share a lot of symptoms and, indeed, patients) and told not to worry, I appeared to be a mild case. But a mild case of what exactly?
The leaflet was essentially a list of symptoms and medications. As lupus symptoms vary from fatigue and headaches to organ failure and death, this was not very comforting. So I turned to Google. The Wikipedia entry was even more worrying. It talked a lot about the more serious symptoms and some unattractive related ailments. One of the doctors I had spoken to had warned me to be wary of looking lupus up on the internet because outside of the UK it does tend to be a much more serious disease. However, a scan through some lupus chat boards proved that there are British lupus patients having a really bad time of it too.
The problem with a disease like lupus is that the symptoms are so many and varied that it can be hard to pin down what is the disease and what isn’t. For those first couple of years, every ache and pain caused worry as well as, you know, pain, because I was concerned that I might have developed a new symptom and if that was true then it might never go away.
Because here’s the thing: lupus is chronic, systemic and there is no known cure. Although my rheumatologist says that the symptoms I first presented with are likely to be the ones I always have, there’s no guarantee I won’t develop new ones. And I can learn ways to limit or cope with the symptoms I do have, but they will never completely go away.
I have learned to cope most of the time. My fatigue specialist has gone from handing me tissues for the inevitable tears to commending me on my healthy appearance. But it comes at a price. My life had to change. In my mid-20s I suddenly had to cut my social life down to almost none. I have to carefully space out what activity I do, but at the same time do enough exercise to stay fit (because fatigue is a big problem for me and the less fit you are, the quicker you tire). It’s a real balancing act that is best explained by the frankly brilliant Spoon Theory. I have to be über prepared for any trip out of the house – in winter, I must take extra care to keep my hands and feet warm and for the rest of the year I have to wear high-factor suncream and cover my head at the merest hint of sunshine. I have learned to love TV in a way I never used to because all-too-often I am incapable of doing more than staring at that screen.
What I haven’t yet dealt with is the guilt. I am constantly letting people down. It’s not my fault and I don’t want to do it, but I am always cancelling plans with a friend or taking time off work on sick leave. I hate that I have to be that person. I am so so grateful to my friends and, most especially, Tim for accepting and caring for the new lupus-fettered me.
It could be worse. I know that. I have a good life, by any standards. I’m happy. But there are bad days. There are days when I am thoroughly fed up with being too tired to do the things I want to do. There are days when I desperately want to read a book or plan a fun trip but my brain is not functioning well enough. And the frequent pain and blood tests are no barrel of laughs either.
So, yeah: lupus sucks. But it gets easier to deal with when more of the people you know understand what you’re going through every day, when your GP has read up about it and can advise you on the little things like flu shots and dry hands. So spread the word. And if you’re feeling generous, a donation to Lupus UK will always be welcome!