I have had lupus for more than twenty years. There were times in those years when it seemed I might not have a future. There were times when I was so ill I did not feel I could fight for the future. And yet I do not compare the relatively mild course of my disease with that of some people I profile in my book.
I have received effective treatment and as a consequence have been able to live productively. I enjoy my family, write books and blog on various websites. I support a small colony of feral cats and try to be a responsible citizen in my community. My life is influenced, but not defined, by my illness.
I would like everyone who has this, or any disease, to have at least the quality of life I enjoy. I can’t make that happen, but I can offer the opportunity to participate in a community of people who share your interests and care very deeply about what happens to you. We who comprise an informal network of lupus advocates are there, everywhere in the world, to listen, commiserate and in some cases offer advice. Perhaps the course of your illness cannot be altered, but in this global lupus network you will find the gifts every human has to give: compassion, fellowship and empathy.
A number of websites are listed on the page Lupus Links. Although I do not endorse the sites (because I do not have a medical background and therefore cannot evaluate the information provided), I have found many of these sites to be informative, helpful and heartening.