'Lupus is part of my life, not all of it'

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living with lupus

Living with lupus

Like many people with lupus, I'd been feeling ill for years before I was actually diagnosed. That's one of the problems with lupus; the symptoms are often vague and mimic other illnesses, which frequently confuses doctors. I first became ill when I was about 38. I had extremely severe flu-like symptoms and was rushed to hospital with suspected meningitis.

After this episode I continued to have further symptoms such as night sweats, painful joints and extreme fatigue. I also felt depressed, which is unlike me as I'm normally a really upbeat person.

For about four years, doctors couldn't tell me what was wrong and just prescribed rest. They suggested that I was stressed, or that it was my hormones. I was actually asked if I'd like some counselling as I looked really well, so the GP seemed to think I'd become a hypochondriac. Finally, I was referred to an arthritis clinic, where one simple blood test revealed I had lupus. It was such a relief to know I wasn't imagining it all!

A lot of people with lupus take anti-malarial tablets, which dampen down an overactive immune system. Unfortunately, I'm allergic to them and I didn't want to take steroids because of the possible side-effects. As my lupus is considered mild, I have chosen to control my condition using diet, exercise and positive thinking. I avoid processed foods and do a lot of gentle exercise, like walking. I also know I have to try to keep my stress levels to a minimum to avoid 'flares'.

At the extreme end of the scale, lupus can cause life-threatening organ failure. But in the majority of cases, as long as people are diagnosed early on, there's no reason why they shouldn't be able to live a full and happy life, even with lupus. I'm proof of that!

Angie Davidson, 52, is from East London

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anna mum of a lupus sufferer

my daughter was diagonosed with lupus when she was 10 yrs old she is now 20 yrs old it is very hard to see her in pain she has had a lot of problems over the years gets very depressed she wants to lead a normal life but her body wont let her she wants to work but has more bad days than good days because it is invisible people dont understand it she has raynauds very bad scrogens syndrome suffered with continuous nausea and dizzyness every day i am very proud of her just wish i could take some of the pain for her and help her live a normal they say it is a disease fighting against her body but she is trying to fight back but is not winning


Hi, my name is Joe. I am a boyfriend to a lupus sufferer. Man I dont know where to start. Do I start with my frustration? Do I start with my misunderstanding? Do I start with my impaitient behavior, or my guilt? There are many times that I forget that my girlfriend has this disease. I have know idea how she feels both physically nor emotionally. Sometimes I cant comprehend how the same girl, so active, such a competitor, always wants to rest. There are times that I forget how detrimental the sun can be for her. How upset I get at times (not spoken aloud) when we cant go out for long periods of time. How selfish. How ignorant. I will never know how she feels. Not only about her pain, but about how she holds her head up as she knows that she can not have the same life and advantages that she once had. Im sorry babe! Im sorry for thinking with such selfish thoughts. I apologize for sounding like I am using this forum for dumping grounds. However, I am glad that I can acknowledge every word writen. To all of the boyfriends or girlfriends of lupus sufferers. Its hard. Its hard to distinguish the foundation of the mixups in your relationship. Its hard to give more leway in most situations, especially when you know youre right. Man, pride is a son of a bitch. But if we can do our best to put that pride aside and step down, Im pretty sure that the benefits are awsome. I will try harder babe! Joe

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