Here I will introduce just three people that I call chronic illness heroines: Henrietta Aladjem, Mary Shomon, and Lisa Copen. At some point each of these women was diagnosed with a chronic inflammatory and/or autoimmune disorder. Their old lives or the lives that they had planned for themselves could no longer be. This experience could have left them feeling powerless and hopeless as though they could no longer be "productive" members of society. Each of them, however, was able to build a new life in which their diagnosis played a central role as they reached out to help others.
I was dx with lupus in the mid 1960s. I often point out that the physicians who gave me the diagnosis knew so little about lupus that they handed me the diagnosis as a death sentence. The only medicine approved for the treatment of lupus by the FDA was aspirin and that was all the physicians offered me. I fought the depression, the being misunderstood by family and friends (who thought that I was a lazy hypochondriac), while trying to finish college, raise my son, and hold on to a marriage. In 1972 I was pregnant with my second child when I found a book written by my first chronic illness heroine. Her name was Henrietta Aladjem and her first book was The Sun is My Enemy.
I was dx with thyroid disease almost two decades after the dx of lupus. A few years ago i realized that my thyroid issues were no longer responding to treatment with T4 alone. I went in search of a literature that would help me find some answers for myself. I found Mary Shomon. I found her advice about Living well with Hypothyroidism and her advice aboutLiving Well With Autoimmune Diseases helpful. I am also able to see that Mary did not allow her diagnosis to make her feel unproductive. She clearly belongs to the same school of thought as Henrietta Alajem.
The final person on this short list is Lisa Copen, who has also authored more than one book and is the founder of Rest Ministries.
If you are a young person who is awaiting diagnosis and or have just been recently diagnosed and you believe that your illness will prevent you from being a "productive member of society," I would like to introduce you to these three women. They have used their intelligence, their creativity, and their drive to be extremely productive in spite of their diagnoses. I hope that you can find their experiences inspirational and/or motivational.
I also invite everyone on life with lupus to share the names of people living with chronic illness that they find to be motivational and inspirational. There are people who do this every day and many of them do it without putting their diagnosis at the center of their lives. Who are your chronic illness heroines and heroes. To whom would you advise young people to look for inspiration and motivation and validation.
I think you are my heroines I have learned so much from your post in answer to people's questions I have had lupus for awhile and kind of pushed it to the back burner and now I am having all sorts of problems. You are an inspiration to me and I always look forward to seeing you on the site. I will have to look at the books mentioned above I love to read.
I agree completely....Ann, you are my heroine! I would not be feeling as well as I do now, without all the wisdom I've gotten from you. I never knew about vit D deficiency, or how a healthy diet would help me so much, and staying out of the sun. My doctor never told me anything, just gave me a pamphlet. My first book was by Nancy Harbinger, the first year after diagnosis.
Ann, I would have to agree that you are a heroine to anyone who reads your posts. You have seen the diagnosis of lupus go from that "death sentence", lived a productive life, helped others, and taken the attitude that you would not be defeated or defined by this.
A hero who has been in the spotlight, but not for lupus, instead for early onset parkinsons would be Michael J Fox. He has done a ton of fundraising for research, and I was quite happy to hear recently he will be able to return to his acting career. (I have a book in my to read stack, the title I think is I had to die to learn how to live, about Kevin Sorbo's health battle.)
It is the people who carry on, who remain strong and determined to do whatever helps them, and not allow an illness to become all defining, that I find inspirational. I'm unable to count any more how many positive people have shared their story with me while waiting on a doctor's appointment.
Henrietta was wonderful...remember how she send you bday cards!!
In 1960's,...even when i was diagnosed in early 1980's, i had people thinking i was terminal and going to die. My rheum told me not to read any books even a year old on lupus since it was so negative and behind. AIDS really did help get some new info out about autoimmune diseases though it is not one.
Yes you fooled them by not dying too! I could not even find rheum when i was diagnosed...thankfully one we did finally find was wonderful! He be my hero...not only because he was wise doctor but also because he taught me how to respect myself with doctors and how great doctors can and should be! Dr Fitch of Sacramento, Calif!!
Also my GP who a year ago was diagnosed with lou gehrig's disease..Dr James Parker of Mt Shasta, CA...he has done so much good for our community including setting up clinic for people who either do not have insurance or cannot afford to pay for doctor visit...call Pay It Forward..all he asked is they volunteer at local place instead of paying. Now over half doctors at least up here participate in it and it has spread into many other states!
He like my first Rheum just had/have great big hearts!!