In 1966, when I was in High School, I experienced my first symptoms but diagnosis didn't come till 1983! My initial symptoms of aches and pains, coupled with tiredness, were put down to growing pains and the stress of study. As I was too tired to join in the usual teenage social activities I was isolated from my age group. No one understood the difficulty I had just getting the homework done.
During my training to become a registered nurse my symptoms continued and frequent medical consultations during the years came up with diagnoses of stress, depression, needing a boyfriend/husband, laziness, hypochondriac, work avoidance, poor diet, etc. I was given anti depressants and sent to a support group for people with mental illness. I was even told to get out into the sun and work up a suntan as I was too pale! Needless to say none of these things helped. I completed my training but not once did I come across lupus in a textbook so I was not able to diagnose myself.
My courtship was spent with my future husband frequently visiting me in hospital. My health was continuing to deteriorate but still no diagnosis. One specialist tried me on Plaquenil for my rash and pains but my improvement on that medication still did not bring a diagnosis. Starting oral contraceptives prior to my wedding was a disaster as it made me ill for the wedding day and honeymoon. Stopping the medication and the improvement still did not bring a diagnosis. In this happy time of my life I was still being told I was depressed. Working became even more difficult and I had to resign. In general people thought I was just being lazy and wanting to live on my husband's earnings. I even had nasty letters from family members saying I was being selfish and lazy. Fortunately my husband was very understanding.
Due to my husband's job we moved several thousand kilometres to Melbourne Victoria. I had had enough of doctors and refused to go and see any more. After several months I was so ill and in so much pain that I had to go to a general practitioner to try and get some pain relief. Blood test results had the doctor phoning me, an unusual thing in Australia and always a sign of a serious problem. This doctor arranged an urgent appointment with a rheumatologist and eventually to the diagnosis of Systemic Lupus. Due to my long history of "psychiatric problems" this specialist would not explain the disease and because he would not answer questions had me convinced that I only had a short time to live. "Go home and have a stress free life" were his words. This was reinforced by the only information that I could find which said people with lupus generally only had a five-year lifespan. Fortunately I went back to my General Practitioner who told me that he knew nothing about Lupus but that he would find out. At my next visit, he had researched the disease and he referred me, at my request, to another rheumatologist who was more up to date. At this point I became a member of the Victorian Lupus Association and found I could have a normal lifespan.
From this point my health improved with the proper treatment. I was unable to return to full time employment but have had a full and productive life. Since diagnosis not one doctor has suggested that I was depressed or had any other psychiatric illness. Since 1983 there have been problems with side effects of medication and three miscarriages but I do now have a healthy son. I continue to have a happy marriage. I remain active and work as a hospital chaplain and I am the Southern Region of Tasmania Support Person for the Tasmanian Lupus Association helping many people through the trauma of finding that they have Lupus. Although living with Lupus is not easy, it is certainly no reason to stop being active and enjoying life.
***Many thanks to Heather for sending her story all the way from Australia, it's nice to hear from patients all over the World. If you are living outside the UK and would like to share your story, we'd love to hear from you (and don't forget to send us a photo!!)