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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.
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so all I could do was rely on my rheumatologist to give me information and look at library books, which were often out of date.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 over a year a lot of us have dreamt of meeting up with friends and being social again but now that time is starting to arrive are we all ready to mix with others again? Whilst the idea of a return to a so-called ‘normal’ is exciting for some people, it’s frightening for others, even those of us that would usually be considered ‘confident’.
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.
When the bells tolled to mark the start of 2020, I never imagined it was going to be a year like this. As I was turning forty this year, 2020 was going to be a good year, filled with loads of plans but that all came to a grinding halt in mid-March. Little did any of us expect that a pandemic would hit and that the whole world, as we knew it, would literally come to a stop.
I previously wrote a blog ‘the outside world has suddenly become a scary place’, talking about despite the fact I’m normally a confident person, because of Covid19 I felt frightened to go outside my front door.
I now find myself looking at the other side of the coin and sometimes feel nervous inside my house, which is normally my ‘safe haven’
Even though I had a lot to be anxious about during the lockdown (I have lupus, I recently had a kidney transplant, I’m from a BAME background and work in the NHS) being advised to shield wasn’t the worst thing I’ve had to do and there was something soothing knowing everyone was in the same boat of trying ‘keep calm and carry on’.
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.
There are going to be people such as lupus patients who are going to self isolate, we don’t really have much choice as for us it might be a matter of life or death.
For some people this can be stressful and difficult. It’s already recognised that social isolation is one of our biggest killers so we should take as many steps as we can to make this as tolerable as possible.
When asked to describe themselves people often say they are someone’s mother/father/sister/brother/wife/husband, maybe what they do for a living, where they live and so on, but how would you describe yourself? In amongst the words would lupus or pain or exhausted etc be part of the description? Think about the quiz shows where the teams introduce themselves, “My name is John, I’m 51 and a Managing Director from Essex”, not once do they say “and I have lupus (or any other chronic illness)”.
