People don't understand when I reel back in horror if they cough or sneeze, but when you have lupus, you are at increased risk for all kinds of infections.
The many ages of lupus
I’m sure you’ve read the fact that the majority of lupus patients are between 15 and 45. This is correct, but lupus can develop at any age and can affect men and children too. Doctors may dismiss lupus if the patient falls outside the 15 to 45 age range and this may lead to even further misdiagnosis.
But you don't look sick
I doubt there’s a patient in the World with an invisible illness that hasn’t heard the phrase ‘but you don’t look sick’. I’m one of the ‘lucky’ lupus patients in the fact that I rarely look sick. I’ve only ever had one visible rash and that was on my legs otherwise I usually have no outward sign that I’m actually ill.
"I'm fine", our most common lie.
One of the things people say most often when they see you is ‘how are you’, an innocent enough question to most people, but when you have a chronic illness are they asking exactly how you are or just being polite? How many people want the full low down of how we’re actually feeling?
My stock answer, even with people I know well, is ‘Oh I’m fine thanks’ and I’d be pretty sure a lot of other people with chronic illnesses are saying the same thing. So why do we give this answer?
I told you I was sick – the long road to a diagnosis of lupus.
My story is on this website and if you’ve read it you will know that it took me over 4 years to get a diagnosis of lupus. In the end it was sheer luck that my GP got fed up of seeing me and referred me to a rheumatologist, who happened to be Professor David D’Cruz (a rheumatologist with a special interest in lupus, now at the Louise Coote Lupus Unit, London).
Well that's a bit weird, strange things associated with lupus.
When you get a diagnosis of lupus you naturally want to learn all you can about it and generally it’s easy enough to get lists of symptoms from reputable and trustworthy sources so that’s all fine. However there are some things that you might have experienced that no-one mentioned and were left thinking ‘what the heck’?!
