LIFESTYLE

Living With Lupus: 5 People Reveal What It Is Really Like

'According to doctor Google, I was going to die within 10-15 years.'

31/08/2016 14:19 | Updated 31 August 2016

Lupus is an autoimmune condition that affects roughly 15,000 people in England and Wales.

The condition means that the immune system starts to attack and inflame healthy cells, tissue and organs and the effects vary form person to person and can range from mild to life-threatening.

However, being diagnosed with Lupus doesn’t mean that life as you know it is over. Here five people explain exactly what it is really like to live with the condition.   

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Adam Selowitz

Adam Selowitz, told The Huffington Post: “In 1987, at the age of 16, I had some trouble taking a deep breath, my joints ached and I was getting frequent headaches. After many scans, blood tests and the normal poking and prodding that comes with finding a needle in a haystack, I had a diagnosis.

“My parents spoke to the doctor and then to me, and they simply said, ‘You have Lupus’. I had never heard the word and didn’t know anything about what that meant to the rest of my life.

“I remember learning that it was not fatal, but that there was no cure. I was told that there were pills I would have to take that should start to make me feel better, but that those same pills had some side effects that might not be so pleasant. And so, the next day, I started taking a variety of immune suppressants and anti-inflammatory drugs.

“I am lucky. My Lupus was diagnosed early and treated very aggressively, and despite losing over 15% of my lung capacity, the disease has not progressed in any significant way. I do have daily struggles with several bi-products of the disease. But again, I am lucky.” 

Hibbs Lupus Trust
Alice

Alice Pointer

Alice Pointer, who campaigns for The Hibbs Lupus Trust, was diagnosed in 2013.

“My experience with Lupus has been a whirlwind. I had never heard of (it) until 2013.

“Six months after the best day of my life - my wedding day - our lives turned inside out. I was taken by ambulance with suspect meningitis to hospital. After a lumber punch, X-rays and lots of blood tests I was diagnosed with meningitis, sepsis, a blood clot on my lung and double pneumonia. 

I did what a lot of people do and I Googled Lupus. Now, that was a big mistake." Alice

“After being under the critical care team and stays in two different hospitals over Christmas and New Year, I thought some rest and TLC, everything would go back to normal. How wrong was I? 

“[When I was diagnosed] I did what a lot of people do and I Googled Lupus. Now, that was a big mistake. According to doctor Google, I was going to die within 10-15 years.

“I describe Lupus as being like the Tazmanian Devil. It comes into your life with no warning, causing mess and destruction that you are left to sort out.”

Aiden Gallagher

Aiden Gallagher, told The Huffington Post: “It all started with a spider bite. I had gotten bug bites before. Who hasn’t? But this time was different.

“I started having strange symptoms: joint pain, a stabbing pain that felt like 10,000 knives in my stomach, extreme fatigue and a rash on my face. After what felt like a million rounds of blood work, and 15-20 doctors, I learned that it wasn’t the spider bite at all that was causing my pain. I had Lupus.

“They told me there’s no known cure. While the treatments helped manage my Lupus symptoms, there were also serious side effects. They affected my brain, nervous system, kidneys, and bones, among other things.The steroids caused me to gain almost 70 pounds in one summer, making a normal childhood impossible.

“Lupus took over my life and my whole family’s life. I had to stop playing softball due to photosensitivity; I had to leave my fifth grade graduation early for blood tests; I couldn’t stay in my classes because of many missed school days and the effect of the drugs on my memory.

“In the eight years since my diagnosis, I have come to learn how cruel and mysterious this disease can be. But instead of letting it get me down, I have channeled my energy into helping others who have Lupus, and advocating for research and treatment. I know that what I have learned from my experience can have a positive impact on the lives of others.”

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Rachel Warburton

Rachel Warburton, who campaigns for The Hibbs Lupus Trust, explains what it is like trying to live a normal life with Lupus: “I’d always assumed that one day I would grow up, get married and have a baby. When I was diagnosed at the age of 14, I still assumed that would all happen. I don’t remember exactly when it dawned on me that there might be a tiny flaw in my plan but it did. 

“I was so nervous walking into clinic and telling my doctor that I was ready to try for a baby but they’d seen it coming and had a plan in place.

“I’m not saying pregnancy was a breeze. It really wasn’t. I coupled extreme morning sickness with starting a new job, trying to convince the whole world I was just having a bit of a flare as I threw up my lunch and stared intently at a wall in a meeting so I wasn’t sick on the visitor’s shoes. To this day, I couldn’t tell you what was said.

“I was nervous every single day. I wouldn’t let anyone announce our pregnancy because I was terrified something would go wrong. I tried to keep it a secret from everyone at work, telling them I just looked awful because I was having a flare and my skirts didn’t fit because I’d simply eaten too many sausage rolls.

“The hospital became my second home even more than usual and, towards the end, I needed a bit of a helping hand with some extra doses of steroids and some TLC but was it easier than I’d expected? Oh yes.”   

Holly Langer Hawke 

Holly Langer Hawke, 35, told The Huffington Post UK: “Three days after my 30th birthday my dad and I went to watch motorbike racing at Brands Hatch. We were enjoying the racing and the sun decided to make an appearance so I put sun screen on. About 30 minutes later something didn’t feel right, I went into the toilets to throw some water on my face only to be horrified by my reflection. It looked as if my skin had been in contact with acid.

“Things kept getting worse over the next day so I went to the local A&E department but was sent home. I did loads of research on the internet, and was diagnosed with a multitude of different conditions. I even applied to Embarrassing Bodies on Channel 4 as I was desperate for answers.

“The GPs had written me off as a nuisance and some were quite rude to me about wasting their time. I first heard of Lupus when one of the doctors dismissed my symptoms as polymorphic light eruption by saying that isn’t anything serious like Lupus, as you’d be far more ill.

“I left the doctors and googled Lupus. I found the Lupus UK website and went over their symptoms list. I was shocked, it all matched; ulcers, hair loss, fatigue, joint pain, sun sensitivity, rashes. 

“With renewed vigour I went back to the doctors and asked to be tested. The results came through and the GP invited me in. She told me that I had tested ANA positive and that looking at the symptoms she thought that I had Lupus. I was relieved that I had an answer.

“So my life has changed from quad biking through the desert in the blazing sun to taking a more sedate pace of life. As it is, I work full time, am four years into a law degree, have an active social life, get involved in raising money for Lupus UK and have taken up pole dancing for exercise.”

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