I often ask people what is the worst thing about having lupus and get varied responses, one response that other people might not expect is ‘I feel guilty’. Even thought we didn’t cause it and can’t control it, we can still sometimes feel guilty about having a chronic illness.
When you get lupus the reality is that you will almost certainly have to make lifestyle changes and one of those may be to your work life. Whether you live to work or work to live a job is an integral part of most people’s life. When lupus strikes it can often prevent people from continuing to work at all.
When you’re having a flare you really don’t want to move much so this might help. You can prepare a flare or bad day box/bag in advance to have ready for when you need things close at hand. The idea is to put everything you might need into the box, include all your favourite things and a few treats.
Some things that might trigger a flare: divorce, bereavement, virus and Christmas!! Yes Christmas, a wonderful but potentially very stressful time of year.
Lupus is unpredictable and can interfere with our lives, stopping us doing everything that we want to and that includes participating in Christmas celebrations.
So let’s look at a few Christmas hacks so you can participate in Christmas!
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.
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.
We live a celebrity obsessed world, just take a look at the number of followers they have on twitter/instagram etc to confirm this, when celebrities speak the world listens. If they wear something or do something all the followers sit up and take notice, hence so many brands want to use a celebrity to promote their products.
People follow the daily lives of these people and feel they know them as friends and so who better to give information about health, aren’t friends and family the people we turn to t ask for advice? Some celebrities promote only themselves and their brand, others have used their high profiles for good and to raise awareness of various causes and illnesses.
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?
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).
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’?!