Mom warns of lupus symptoms after months of misdiagnosis
“I lost so much weight and didn’t feel feminine or attractive.
“I felt like a leech to people – I thought I’d better die,” Liberty Mills, 48, told Metro.co.uk, recalling the years since her lupus diagnosis.
At the age of 30, the mother-of-two found out she had lupus, an autoimmune disease she knew nothing about.
Now, for Lupus Awareness Month, she’s on a mission to shed light on the disease – which can often be misdiagnosed like other things – and to highlight the importance of spotting it early.
“They call lupus ‘the great imitator,'” Liberty explains.
She first noticed something was wrong when she returned from a family vacation with strange bumps on her face, which her GP attributed to a new sunscreen she was using.
It was difficult for Liberty, who was working as a beauty model at the time.
The medications did not help and she began to lose a lot of weight, while experiencing extreme fatigue and body aches.
Liberty, from Holmfirth, Yorkshire, says: “My modeling agency used to say, ‘you’re a commercial model, you can’t be that skinny, you look really skinny.’
“But I was eating like a horse, but the weight was going down. I also had canker sores and was in so much pain.
“I was so hurt in my own body. Then I started to get tired, so I had to set an alarm to make sure I could pick up my daughter from school.
“I was afraid of not waking up if I took an afternoon nap.”
I was so bad in my own body
Liberty went back and forth with doctors for nine months trying to get to the bottom of the issues she was having.
She continues: ”A doctor even told me that I was anorexic. I assured them no, but he insisted, so I thought I was going crazy.
“Another said I had insomnia because I wasn’t sleeping properly – so they put me on an antidepressant to put me to sleep.”
“My periods were all over the place too. Everyone put it on the stress, as I was a single mum, saying I was working too much.
But it was a young locum doctor who finally pieced all those issues together.
Liberty adds: “The GP said to me ‘Do you watch House TV?'”
The doctor proceeded to explain that in 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 still not lupus, well, I think it might actually be lupus.
“She gave me a blood form and sent me to the hospital. I had nine markers out of the 11 for lupus.
“It took a long time to be diagnosed because in our healthcare system you go to a gastroenterologist for your stomach; you are seeing a rheumatologist for your hip pain; you see a dermatologist for your face; you could see a psychotherapist for your anxiety, but no one was stringing those beads together and making it a collective.
- joint and muscle pain
- extreme fatigue that won’t go away no matter how long you rest
- skin rashes – often on the nose and cheeks
These are the main symptoms of lupus.
You might also have:
- mouth sores
- high temperature
- hair loss
- sensitivity to light (causing rashes on uncovered skin)
Liberty adds that she knew nothing about lupus when she was diagnosed and was unprepared for the extent of the decline in her mental and physical health.
She explains, “The first thing they gave me was a leaflet that said there was no cure. They put me on autoimmune suppressants to keep my body from attacking itself, as well as painkillers.
“They worked for a bit, maybe two years, then it plateaued and the painkillers weren’t working.”
During this time, Liberty experienced frequent lupus flare-ups and was often hospitalized for cluster migraines.
She also suffered from so much fatigue that at age 35, she needed assisted living devices for her home, including a cane, Zimmer frame and a lever to get out of bed.
She even had to move out of her house and into an apartment because she couldn’t use the stairs.
Liberty recalled: “I remember walking around getting my prescription with this lovely 89-year-old man called Willie.
“We used to walk to catch them with our rods and sometimes I had to stop before Willie. I literally felt like I was dying inside.
“I felt isolated, felt like a bad mother and a failure to my daughter and lost so many friends because I couldn’t go out and socialize.”
I felt isolated, I felt like a bad mother and a failure for my daughter
But Liberty says a turning point came when her 13-year-old daughter asked how she could pay the mortgage when she died.
Liberty recalls: “My daughter said to me very calmly: ‘You are going to die soon, so how am I going to pay?’ I’ll just be alone.
“And that’s when I thought there is no cure, there must be someone in the world who has reversed this.”
Liberty then spent her time doing research, talking to other people with lupus, and meeting with professionals about her options for feeling better.
After trying everything from acupuncture to Chinese herbal medicine, Liberty finally visited a functional medicine expert who helped her get back on the road to recovery.
She also attended the Louise Coote Lupus Clinic in London for checkups and advice.
Now she’s been 10 years flare-free and marker-free — and works as an integrated nutrition coach, working one-on-one with people about their health and anxiety.
But Liberty hopes her story can shed more light on lupus – a disease that can have serious long-term health consequences if left undetected.
She adds: ‘There must be a huge awareness because it gets misdiagnosed and then they treat you for something else, and it builds up.
“It can start attacking other areas, it can start attacking your kidneys and it can go wild – you can deal with that with medication, of course, but a lot of people with autoimmune disease have an intolerance. gluten-free – so it’s good to be aware of that.
“People don’t know the ‘everyday’ of lupus – the swollen glands, poor circulation and depression. They might not think they have lupus.
She says this is particularly important as more and more people are being diagnosed with lupus – so much so that the Louise Coote Clinic has been forced to move to a bigger location in London.
She adds: ‘It’s becoming more and more mainstream, but the science isn’t catching up and people’s consciousness isn’t catching up.
“People talk about it when it’s at the catastrophic end, when you might be on dialysis or need a transplant, but they don’t talk about the little everyday things – like having a vitamin D spray, eliminating gluten, having less processed foods – this might help.
Lupus is best if detected and treated early.
Once diagnosed, an individual will be advised to undergo regular check-ups and tests, such as regular blood tests to check for anemia and urine tests to check for kidney problems – and, in ultimately, it can be monitored to prevent further decline in health.
October is Lupus Awareness Month, to find out more about the disease visit lupusuk.org.uk.
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