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.