Read the Washington Post article in which Michelle was interviewed regarding being a "difficult patient" here.
Michelle wrote a piece titled "On Being a'Difficult' Patient" that was published in the Narrative Matters series in the journal Health Affairs. Some of you may remember her post in early September regarding her trip to DC to attend the Narrative Matters conference. In her typically humble fashion, she mentioned and provided links to others' articles, but not to her own. The link above will take you to her article, and you can click on the "Reprint (PDF)" link to download it.
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What is truely amazing is that this article is already circulating throughout the nursing community.
I hope the medical community learns something from Michelle's observations and experiences.
Michelle thank you for your words of wisdom for the whole world to hear.
Jillian and I were referred to as "the difficult" patient and her advocate Mom. Jillian had
Wegeners Granulomatosis. We had to learn a whole new language in the medical field and when we went in with are notes, statitics, and medical findings we were treated as if we were wasting our time.
There was a few that we did find that actually treated us as people, not a number, sad statitic, or research paper. I hope that this article finds its way in every hospital in the world.
To Michelles family my heart goes out to you. My Jillian has been gone since April 2007. I pray you find peace and know you are not alone. Everyday is a new day but its a good day because without our loves ones here or gone we wouldn't be who we are today. They gave us the greatest gift, their love.
Elaine
I would love it if you would continue to post things about Michelle. I feel so much like I am still connected with her and I love reading things like the article she wrote. I know it will end eventually but can we please hold on for just a little while longer? Bill, you should start a blog so all of us that care for you and the children because of Michelle letting us know you through her words can keep up with all of you through the months (or years). It would be great if you would be willing to share.
that aticle was great...and as you can tell my spelling sucks...but because of the article, i am now going to pursure the spot on my lung which i was scared to find out about, but i am now ready to find out if its just a spot that is slowly growing or more , and if it is more pursue what is wrong and deal with it.. with all that i have.. once agin michelle is reaching out...
Just wanted to join the other poster who wishes that Bill would keep Michelle's blog going so we can keep up with how the family is doing. This site has been such a blessing. Please don't let it end.
Bill,
I don't know you so I will reserve my dry wit for now. My thoughts are with you and the pain you are in over this tragic loss. We can be as positive and grateful for all we had but it still doesn't help the void in our hearts or the sleepless nights.
You are not alone....
Kel
I LOVE the new blog header with the pictures. I will keep checking back here.
I, too, have been labeled a "difficult patient" because I wanted to know the treatment if an invasive test was positive. Too often there was no treatment or the doctor didn't know or wouldn't say. I've chronicled my tribulations of being made disabled at the hands of my doctors at http://doctorblue-blues.blogspot.com
To Bill and All Michelle's Family,
I came across this blog through a friend recently, and read all of michelle's posts and your beautiful memorial speech. I have been profoundly changed by what she has said, and as someone whose health and future is also uncertain because of a severe disability, I have found a sense of peace and understanding in her words and her wisdom. I have grown to love her through her words, and she has touched my life with their beauty, and honesty. Please know that she continues even after her death to bring comfort and joy and wonder to others, even strangers like myself.
I know that even though Michelle's journey ended, your and your families journey still continues, and the grief still continues for you all. You and your children are in my heart and prayers and thoughts as you move through your life together.
Love and best wishes to you all
Katie
I want to thank Michelle, and I still will. I am a 'difficult' and often 'difficult and complex' because like Michelle the disease is rare and if I accept that they said I had stress or whatever, would I have a better go of it? No. I think the fear of appearing ignorant has created a cycle of dumping and labelling patients as difficult. The idea that doctors don't WANT to learn more was one that took too many years for me to learn, and accept. Thank you Michelle for writing this, in such ways the world is changed.
Inquiry, please contact me. MelanieLBowen@gmail.com
A gift of social media. Just read Michelle's article for the first time. Was so moved that I clicked my way to this blog... only to discover that I missed my chance to thank her. So .. to you her family, I thank you for such a beautiful gift, and send my heartfelt sympathy for her loss.
i love you mom
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God bless you Dr Akhigbe for your good hand work on my life.
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