My name is K-M, I’m 34, and I lived with undiagnosed lupus for at least 12 years. I now believe, however, that I have had some of the symptoms since childhood.  In 1997 I suddenly became extremely sick: I was so tired that I couldn’t stay awake and didn’t have enough energy to lift a glass of water. I began to experience unbelievable pain, and joint difficulties. I started to get strange rashes all over my body. It seemed every part of my body was falling apart or not functioning properly. I searched for answers but was told by countless doctors that there was nothing wrong with me, it was all in my head, or that I was an ‘hysterical woman’. Finally after a year I was told I had Chronic Fatigue Syndrome.

 I learned to adjust my life, ‘scheduling’ my energy, changing my diet, trying to stay away from the triggers I recognised, but never understanding why some things just wouldn’t get better. In 2007 I was actually told I had lupus by a doctor after a routine blood test, but he also told me that it wasn’t anything to worry about and that it was definitely different to the Chronic Fatigue and wasn’t causing my new symptoms of severe chest pain, tendonitis in my feet, and my wrist being so sore that I could no longer write.

 At the start of 2008 a flare began that continued to worsen until I ended up in hospital in November barely able to function. All of my pre-existing symptoms got even worse, and I also developed severe photosensitivity, I lost all feeling in my hands, arms and feet, I started to get a daily butterfly rash and all of my other rashes worsened, my memory loss became dangerous at times, I had severe visual and sensorial disturbances, I had hallucinations, I had trouble understanding what people were saying to me, and I would mix up my own words and thoughts. My migraines were so bad that hearing a bird in the distance made me feel violently ill.  I continued to see many doctors who all told me they couldn’t find anything.  I had no idea that this was lupus and none of the doctors seemed to either. Finally a doctor suspected I had MS and I was rushed to a neurologist. I was devastated that I had MS, but I was also strangely relieved: it was an answer, there was treatment, it wasn’t in my head, and there was a lot of support available to MS sufferers. However, the neurologist told me I didn’t have MS but that lupus was a lot more severe than anyone had told me. I then ended up in hospital and by the time I left there I was in a wheelchair, I had to quit a job that I loved, and I didn’t think I’d ever work again, but I had a proper diagnosis (the SLE was active in my heart, lungs, joints, skin, and brain). I was also diagnosed with fibromyalgia, Sjogrens Syndrome and Reynauds. I was given medication which I was told would help.

 I got worse before I got better and I had to go on more and more medication. My body puffed up dramatically from the prednisone, but soon the wheelchair became a cane and then nothing, and after a few months I was able to start working full time again in a fantastic job. My husband was by my side throughout all of this and had to become my full time carer when I completely lost my independence.  Lupus is as much a part of his life as it is mine, and it affects every aspect of our lives together, and individually.

 We were both disheartened by the lack of understanding and support available to people affected by Lupus, and we are determined to help to change that. We set about educating ourselves so that we could educate others, and we remain devoted to lupus advocacy and raising awareness. We try to remain positive, even though some days are a lot harder than others. My life is ruled by my medication, hospital visits, triggers and flares.  I enjoy being able to work full time again, but SLE severely limits my social life.  We work together to try and make my life as easy as possible. We celebrate every day as the gift that it is. We stay in the lupus loop to make sure that one day there is life without lupus.