Welcome to Blackbird at Night!
My goal for this website and community is to become a voice for people with invisible illnesses, that is, illnesses that you may not see when you look at a person, but nonetheless greatly impact that person’s quality of life. I want to shed some light on these illnesses. I want to express what it means to live with them, so that other sufferers will feel validated, and just as importantly, non-sufferers will understand more about the things they can’t see.
In particular, I talk about depression and Sjogren’s Syndrome (an autoimmune disease rather like Lupus and Rheumatoid Arthritis in its systemic form) because those are some of the challenges I’ve faced in my life, but I will also give a voice to other physical and mental illnesses when I believe a message needs to be heard.
I was born in 1966. I first experienced symptoms of major depression in 1988, which developed over the next few years as I became chronically ill with an unknown illness. There was nothing more distressing as a young adult to suddenly become chronically weak and ill, and to have that disastrous change dismissed or minimized by medical practitioners. All you know is that you had what people call ‘good health’ and suddenly you no longer have it.
In 2002, my illness was diagnosed tentatively as Sjogren’s Syndrome: an autoimmune disease I’d never heard of before then. When I read about it, it was like reading my health history. It took me 12 years to get a diagnosis, and many years to try treatments that ultimately I couldn’t tolerate. That’s something that many don’t know about invisible illnesses. Unlike a visible illness, it can take many years, even decades, to get a diagnosis and even then, there might not be a treatment. Life becomes about managing the symptoms.
I once had a promising career in earth and ocean sciences, and then suddenly I became someone trying to scrape along with my technical writing and web design skills. I was able to manage due to a supportive partner. I can’t imagine how much more difficult it would be trying to cope on a meagre disability pension under the disapproving stares of other people. I know many people like this: good-hearted, hard-working people, struggling to make a contribution to society while managing their illnesses within the confines of extremely limiting life circumstance. I believe the efforts of such people deserve to be recognized and celebrated.
The concept of Blackbird at Night came to me one night when I tried to sum up what it’s like to live with an invisible illness. I thank the Beatles for the spark of inspiration. A blackbird is difficult to see at night, but when you hear her sing, you have no doubt that she is there: full of life, beauty and wisdom to share. I like to think that people with invisible illnesses are just like that.
I welcome you to comment on any of my blog posts or to contact me directly. I would love to hear from you.