Lupus Awareness Month: Mum warns of symptoms – after months of misdiagnosis

Liberty went back and forth to the doctors for nine months to try and get to the bottom of the issues she was experiencing.

She continues: ‘’One doctor even told me that I had anorexia. I assured them that I didn’t, but he was insistent, so I thought I was going mad.

‘Another said I had insomnia because I wasn’t sleeping properly – so they put me on an antidepressant to get to sleep.  

‘My periods were also all over the place. Everyone put it down to stress, as I was a single mum, saying I was working too much.’

But it was one young locum doctor who eventually pieced all these issues together.

Liberty adds: ‘The GP said to me “Do you watch the TV show House?”’

The doctor began explaining that, in the medical drama, patients are often expected to have lupus – but it always ends up being something else.

Liberty explains: ‘The doctor said, “you know it’s always not Lupus, well I think this might actually be lupus.”

‘She gave me a blood form and sent me to the hospital. I had nine out of the 11 markers for lupus.

‘It took a while to be diagnosed because, within our healthcare system, you see a gastroenterologist for your stomach; you see a rheumatologist for you hip pain; you see a dermatologist for you face; you might see a psychotherapist for your anxiety, but no one was threading those beads together and making it a collective.’

Liberty adds that she knew nothing about lupus when she got her diagnosis and was unprepared for how much her mental and physical health would decline.

She explains: ‘The first thing they gave me was a leaflet which said there’s no cure. They put me on autoimmune suppressants to stop my body attacking itself, as well as painkillers.

‘They worked a little bit, maybe two years, and then it plateaued and the painkillers weren’t working.’

During this time, Liberty experienced frequent lupus flare-ups and was often hospitalised for cluster migraines.

She was also suffering so badly with fatigue that by 35, she needed assisted living apparatus for her home, including a walking stick, a Zimmer frame and a lever to get out of bed.

She even had to move out of her home and into a flat because she couldn’t use the stairs.

Liberty recalls: ‘I remember I used to walk to get my prescription with this lovely 89-year-old man called Willie.

‘We used to walk to get them with our walking sticks and sometimes I would have to stop before Willie. I literally felt like I was dying on the inside.

‘I felt isolated, I felt like a bad mum and a failure to my daughter and I lost so many friends because I couldn’t get out and soicalise.’

I felt isolated, I felt like a bad mum and a failure to my daughter

But Liberty says a turning point came when her 13-year-old daughter asked how she would be able to pay the mortgage when she died.

Liberty recalls: ‘My daughter said to me really calmly: “you’re going to die soon, so how am I going to pay for it? I’m just going to be on my own.”’

‘And that’s when I thought while there’s no cure, there’s got to be someone in the world that’s reversed this.’

But Liberty hopes her story can shine more of a light on lupus – a condition that can have serious long-term health consequences if left undetected.

She adds: ‘There needs to be huge awareness, because it gets misdiagnosed and then they are treating you for something else, and it’s building up.

‘It can start attacking other areas, it can start attacking your kidneys and it can go on a rampage – you can address it with medication, of course, but a lot of people that have an autoimmune disease have a intolerance to gluten – so it’s good to be aware of this.

‘People don’t know about the “everydayness” of lupus – the swollen glands, poor circulation and depression. They might not think they have lupus.’

She says this is especially important as more and more people are getting diagnosed with lupus – so much so, the Louise Coote clinic was forced to relocate to a bigger venue in London.

She adds: ‘It’s becoming more and more common, yet the science is not catching up and people’s awareness isn’t catching up.

‘People are talking about it when it’s at the catastrophic end, when you might be on dialysis or need a transplant, but they are not talking about the little everyday things – like having a vitamin D spray, removing gluten, having lower processed foods – that might help.’

Lupus is better if it’s found and treated early.

Once it’s diagnosed, an individual will be advised to have regular checks and tests, such as regular blood tests to check for anaemia and urine tests to check for kidney problems – and, ultimately, it can be monitored to prevent further health decline.