Suleika Jaouad Understands Life with Lupus
People take cancer seriously. It’s a known entity. They know it is scary and can kill you and that it requires serious and on-going medical care. They have a general knowledge of symptoms and treatments and side effects and the havoc it wreaks on everything in your life.
And then there’s systemic lupus erythematosus, or lupus.
People don’t know lupus.
The explanation that our bodies attack our own cells and can cause widespread damage, disability, and even death leaves out the personal aspects of life with lupus. Explanations of our daily struggles and their effects on our lives become tiresome litanies of complaints that do little to help people understand lupus.
There is one way to help people know lupus. A way for people to instantly gain a general understanding of our experiences, our lives. We could say we have cancer.
We could. It would instantly communicate the details and the enormity of lupus. Of course, it would also be unethical and diagnostically inaccurate. But there is something to this analogy.
For this reason, I encourage you to read “Lost in Translation after Cancer” by Suleika Jaouad, author of the Life, Interrupted series on The New York Times Well Blog. It is an excellent rendering of life during and after cancer: the bits people who think they know cancer don’t know. It is also an excellent rendering of life with lupus and similar autoimmune diseases. Every detail, including cytoxic treatments and the search for our former selves, is apropos.
Read it. Share it. Help people know lupus.
I think Jaouad’s article about life after cancer could do more for lupus awareness than a million purple ribbons. We just have to point out the parallel.
I’m trying desperately to get the official diagnosis. I have many, many diseases and the one and only thing that shows up in the research of these diseases is LUPUS. I’m going to die, otherwise. It’s just one thing after another and now I’m even getting to the point that I’m being told that I’m just a very complicated, complex patient and they just don’t know what to do with me? My next visit with my rheumatologist is in June and I’m going to have a very serious chat with her about it. It’s not that I want Lupus, I want a name for the auto immune disease that all these doctor’s agree that I have but say they can’t put a name to it. My newest diagnosis is avascular necrosis of my left hip and I”m going to have to have a hip surgery of some sort. I’m just waiting for the surgeon to call and make the appointment to come in and discuss which surgery he thinks will be best for me. He said her really doesn’t want to put any plastic or metal in me if he can help it. Who the hell, my age, has this problem that may require a total hip replacement. I’ve had 13 surgeries and I was only terrified the first time because I’d never been put to sleep before. After that I’ve never been worried or scared, but this drilling on my hip has me very worried and the surgeon said that I will be a very high risk for complications. Of course I will! Take care. I’ll be back to read some more of your blog. I need to get all the information I can before my next visit. 🙂
Beth, I would like to sign up for your blog so that every time you blog it will appear in my inbox. I can’t find the button to do this. If it’s on the screen, please direct me to it. If it’s not on the screen, please add it somewhere. You deserve hundreds, if not thousands, of readers. Thanks, Judy Oops, just saw it down here/there. I was looking in the wrong place. Is it only available for those who leave comments??
Boker tov, Judy! Thank you for your kind words. I redid my website some months ago, and it does look like I omitted a subscribe button on this version. I will try to correct that. Thank you for pointing it out. I enjoy your blog, as well! =