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When I met a lupus patient I’d ask what other autoimmune conditions they had. They’d always ask how I knew they had more than lone condition and I used to say it was like lupus having a party and invited all its friends to come along. In other words its sadly not unusual for us to have two or more autoimmune conditions, know as overlap syndrome.
I’ve had lupus for about 30 years and this is personally what I wish people knew.
It’s incurable and chronic. Just because you see us out and about doesn’t mean we’re ‘better’ or ‘cured’. We have some days that the pain level is tolerable and some days where it isn’t so we take have to take full advantage of the days we can function at all.
I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head.
The reason I decided to have a go at writing this was because over the years I have heard so many patients talking about the difficulty in claiming benefits and the fact that the people dealing with their claims don’t understand anything about lupus. In a way I sympathise with the person that has to deal with the claim as lupus is far more complex an illness to have to assess than some others, it’s definitely not cut and dried so they can just tick off boxes. However, not understanding lupus does not justify them refusing benefits.
I always tell the story of how, before diagnosis of lupus, I had a severe pain in my jaw and my dentist said that I needed root canal. A couple of weeks after the procedure I still had the exact same pain. I was referred to a dentist in Harley Street who also couldn’t work out what was wrong, so I’d spent a lot of money on unnecessary dental work (not to mention the pain). This made me a bit wary of dentists.
I’ve often posted on social media telling people that if they see us out and about, even if we outwardly look very well, we’re not ‘cured’. So I thought I’d address the issue of the fact we can sometimes have good days, these are defined differently for everyone as we all have varying degrees of pain that we consider ‘normal’ for us.
Getting lupus in my late 30’s came as a complete shock. I was normally very healthy, nothing more serious than a cold, then I was suddenly told I had a chronic illness and I would never get better. Whilst the fact I had finally got a diagnosis (after 4 years) was a relief, it was still a complete bolt out of the blue to find out I had lupus something I’d previously never even heard of.
At the time there was no internet so all I could do was rely on my rheumatologist to give me information and look at library books, which were often out of date. With the best will in the world rheumatologists can give you the medical facts, but unless they have lupus themselves they won’t be able to tell you how you might feel about it.
I sort of knew that this could be a serious issue, but it was also something that could possibly be managed and I could live with it, but there were some things that I didn’t expect.
For some people, like me, pets are quite simply a lifeline, it’s no wonder that an estimated 41% of UK households have pets.
Speak to any pet owner and they’ll reel off an endless list of ways their pets have changed their lives. They can be our best friend and, for a patient with chronic illness, a furry friend can provide much more than companionship and cuddles. Studies show that animals can help with everything from lowering stress and blood pressure, to battling depression and helping with chronic pain.
One of the ‘skills’ we seem to develop when having lupus is how to lie. That may seem a strange thing to say, but we spend quite a lot of time playing down our symptoms and pretending we’re fine.
We also often develop what I like to call ‘the skill of omission’: things we don’t admit to friends and family, again for fear of upsetting them. We don’t necessarily do this with everyone, there’s often one person we feel we can tell the truth, usually a partner or the person closest to us.
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.
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.
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).
