23-year-old Nadia Tasher had never heard of lupus when she began suffering from unusual, persistent symptoms that would eventually lead to her visiting the doctor over 80 times in a year. Doctors believed she was a hypochondriac who was suffering from a bad case of anxiety, but Nadia was insistent that wasn’t what it was.
And she was right, she wasn’t suffering from anxiety or any other mental health issue; in fact she had severe lupus, the life-threatening, chronic illness that even many qualified doctors have very little understanding of.
Lupus affects mainly women (90% of sufferers are female, in fact) and is a disease that causes your immune system to attack all your healthy organs and tissues. It can affect various parts of the body, but becomes most dangerous when it begins attacking the heart and lungs, potentially causing blood clots and in some instances, heart attacks.
The first sign that something was wrong appeared four years ago, when Nadia started noticing a butterfly rash on her face. “My cheeks were really red as well as the bridge of my nose, and I was getting more rashes across my arms,” Nadia told Cosmopolitan.com/uk. The rash eventually began spreading down her legs and left her feeling self-conscious, but that wasn’t the only symptom which seemed to emerge from out of the blue.
“It started off with my hair just feeling like it was getting thinner, but it got to a point where I would brush my hair and clumps would fall out,” Nadia said. Baldness and hair thinning, it turns out, is another symptom of lupus, as a person’s immune system starts fighting against the healthy follicles and preventing them from growing new strands of hair. “I always had really thick hair, so it was one of the things that knocked my confidence the most because it was one of the only things I really liked about my body,” she said.
Nadia also began losing a lot of weight, which – at first – she was pleased about. Her boyfriend had not long proposed and, being as she describes “overweight” at the time, she had plans to diet and exercise ahead of the wedding.
“I was really quite overweight,” Nadia explained, “so I started eating a lot healthier and in four months I started seeing some expected weight loss. It was very stable and not at all dramatic to begin with, but six months down the line I’d stopped dieting and lost three stone nonetheless, so it became clear there was something else causing the weight to drop off”.
As if the rashes, the weight loss and the hair thinning weren’t enough of an indication something wasn’t quite right with Nadia, she began experiencing severe joint pain. This is something that can occur in lupus sufferers, she now knows, because the condition wears away the tissue in between the joints, causing them to rub and making movement very painful.
“I get really bad hip and neck pain, which stops me from walking too far,” said Nadia. And tackling staircases can be even worse; “I look fine – I don’t have crutches and I’m not in a wheelchair – so people just expect you to manage it, but I feel like I’m old before my time. Every movement is painful and it can often feel like I’ve been beaten up,” she added.
But despite the symptoms, as well intense fatigue which compromised Nadia’s ability to work, go out and about and lead a normal life, doctors wouldn’t seem to believe the psychology graduate when she complained about how bad things were getting.
“They insisted I was suffering from anxiety, and said all my symptoms were as a result of stress and panic attacks,” Nadia explained. “I’d go in and say to them ‘I’m really worried because…’, but that word ‘worried’ would instantly lead them to the conclusion I was suffering from anxiety, so their only solution was to tell me to go home and rest”.
The doctors were so set on anxiety as a diagnosis, in fact, that they gave her a prescription of anti-anxiety medication which Nadia refused to take. “I knew it wasn’t anxiety because when I’d suffered from it before when I was younger, and it was completely different.
“I would go in with a list of my symptoms because there were so many I was worried I’d forget, but that would make them think I was even more paranoid. They told me I was a hypochondriac, and one GP even said she was going to have to refer me to a psychologist because ‘I’d invented an illness in my head’,” Nadia told us.
In some ways it’s understandable why doctors put it down to hypochondria and anxiety, with her record of more than 80 visits to the GP surgery in one year. But the incorrect diagnosis was a struggle for Nadia, who was by now at her wits end.
“It had been going on so long that eventually I did think to myself, ‘maybe I am being irrational, maybe there’s nothing wrong with me’,” she said. “I did doubt myself at times, and wonder if it really was all in my mind, but then I knew the symptoms were there because I could see and feel them.”
Despite the fact she had even started doubting herself, Nadia continued to investigate her symptoms and eventually stumbled upon some information about lupus after an intensive Google search. With the descriptions really resonating, Nadia insisted the doctors do a series of blood tests to check whether lupus was what had been causing her ill-feeling for so long.
The three tests she did came back as positives, but astoundingly Nadia’s doctors stillinsisted she didn’t have lupus and regarded the results as ‘false positives’. It’s not surprising, then, that she decided to seek out a private consultation from a doctor specialising in the condition. Within half an hour of meeting with this specialist consultant, Nadia was diagnosed with severe lupus, which came with an indescribable feeling relief.
“He could do that in half an hour and I’d been waiting for about four and a half years,” she said. “It was a weight off my shoulders to have confirmation it wasn’t anxiety.”
But while the diagnosis was a relief, it was also an extremely difficult thing to accept because the nature of a chronic illness like lupus is that there is no cure. It means Nadia will go through life simply managing her symptoms with different medications, and will try to live as normally as she can. But inevitably it takes its toll.
“I’ve been signed off work for weeks on end before when I literally haven’t been able to get out of bed, and even just having a shower is too difficult,” she said. At the moment, Nadia works part-time, but her diagnosis has meant she’s had to forego her dreams of a career in the police force because of the physical demand it would require.
“I worry about losing friends, too, because hardly anyone understands lupus so people expect you to be like you always have been.”
Other aspects of Nadia’s future have also been compromised by her lupus diagnosis, too, like her ability to start a family.
“That’s something I’m yet to properly discuss with my doctor,” she said. “But it can be high risk for the child and the mother because of the strain pregnancy can put on your heart.
“It’s a moral question too, over whether or not I’d want to have that risk of passing it on to a child, but I need to understand more about that first,” she added. At the moment, the cause of lupus isn’t properly known, but doctors believe it’s both a combination of a genetic predisposition as well as certain environmental factors which could trigger the condition, such as grief after the death of a loved one, for example.
“I feel guilty about it for my fiancé, because I know he wants to have children and I feel bad that it’s not going to be a straight forward process. But he plays such a massive part in helping me to stay positive.
“I feel like my life has been stolen from me; I can’t have the career I’d planned to have, I might not be able to have the children I want to have, holidays and outings have to be planned way in advance and there’s never a day that I don’t suffer from the pain,” Nadia said.
“But what’s almost worse is the mental battle you have to go through because you look so ‘normal’ on the outside. Hopefully doctors will become more informed about lupus so other people don’t have to go through the struggle I did to get a diagnosis.”