IT’S NEARLY 17 years since I was diagnosed with lupus at the age of 30.  Looking back now, I realise I had been chronically sick since the age of 12, but doctors wrote me off as a sickly child and no diagnosis was given. 

Shortly after my 30th birthday, I visited the doctors to discuss my joint pain. The stand-in doctor that day put two and two together and sent me for urgent hospital tests. After I received my diagnosis however, my problems didn’t end. My condition was mismanaged with the wrong medication. 

I went from  having a rash across my face, aching joints and chronic fatigue to getting cluster migraines that would last up to ten days at a time. I also lost so much weight, going from nine stone  (57 kilograms) to five and a half stones (35 kilograms)  in less than a year. 

At the time, I was a full time model but my trademark afro hair began to fall out. My skin would flake off as makeup artists tried to get me ready for set. I had lesions on my face, and  the insides of my mouth were full of up to 15 ulcers at a time. Sometimes my cracked tongue would split and bleed. 

I’ll admit that I smashed mirrors in my house because I hated seeing what my body was doing to itself. I became bedridden and could not even walk without a zimmer frame. 

This is the reality for so many in our community. One in 750 white women have the autoimmune disease. In contrast, one in 250 Asian or black women struggle with the autoimmune disease according to the Lupus Trust (https://www.lupus.org.uk/lupus-in-ethnic-minority-groups)/.

An autoimmune disease is when the body’s natural defence system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. 

The lack of lupus knowledge in the NHS 

I am now free of lupus markers and I no longer have to take medication thanks to the holistic approach I have taken. I eat an anti-inflammatory diet and regularly take Vitamin D and Omega 3 supplements. With the help of an expert, I have also detoxified my body of heavy metals and learned to better manage stress. 

What worries me is that I mainly did this off my own back, without NHS support. Research from SAGE in 2018 (Scientific Advisory Group for Emergencies) found that half of those surveyed had been diagnosed with something else before finally getting their lupus diagnosis. 

That same research suggested that omega-3 fish oils might have a therapeutic impact on people with systemic lupus erythematosus like me. I think patients should be informed of medical developments like this. 

For example, Vitamin D was recommended as potentially helpful for quite a few of my symptoms. Why aren’t people like me at least screened for Vitamin D deficiency? Due to darker skin tones, black people need to spend longer in the sunshine to get the Vitamin D from sunlight that our bodies need. A lack of vitamin D is seen by some, as a contributing factor to the body breaking down and developing lupus. 

Research cites that stress and diet can impact the health of lupus patients. A holistic approach, which has changed my life was recommended to improve the quality of life for people like me. Some of the medicines that are still being used to treat lupus can cause harmful side effects, according to the report. 

The NHS needs to do better. If they don’t, people with lupus will continue to suffer from preventable symptoms. That’s why this World Lupus Day, I’m calling for change. 

You can find out more about lupus on the NHS website.

If lupus is affecting your mental health or the mental health of a loved one, you can contact Samaritans for free at any time on 116 123 or you can email [email protected] for a response within 24 hours. 

Liberty Mills qualified 2 years ago as a Certified Integrative Health Coach and helps people with lupus. She says her clients have seen impressive results after following her advice. You can find out more about her by visiting: https://www.integrativeliberty.co.uk or follow her on Instagram:@mills.liberty