Note: I am continuously searching for ways, within my limited level of functioning, to be a patient advocate for women and others with chronic illness. I am also always searching for ways to make my life and my experiences meaningful and useful. The other night while watching an episode of Oprah (yes, I TiVo them all!), I felt for the first time that I was ready and the time was right for me to write my first letter on the topic of chronic illness/women's health to Oprah. I don't think it will be my last. Yes, I still want Nate to come. No, he hasn't knocked on my door yet. But, I wrote to Oprah this time because I felt an inner voice telling me to speak out about my passions.
No, it's not my best writing. But it's done. It's sent. My piece has been said. And perhaps peace has been achieved on some level also? Not much I write these days is coming together through the brain fog. If I wait for the day when I write clearly again, I may lack the passion I have in the moment. So, I'd rather say it now with passion than not say it at all.
Oddly, as I mentioned in my blog about my letter to Nate, I have never written to a star or talk-show host before. I wonder why it is that now I have written to Oprah twice in four months? Why I have felt the absolute necessity to use my precious little energy to do so? Have I finally found my voice? Only time will tell.
Blessings,
Emily
Dear Oprah,
After ten years of watching your show (since I graduated from college) and never writing to you (but always wanting to), I am now writing to you for the second time in four months. I can only explain this as listening to God and the shifts taking place within me.
I first wrote to you in November of 2007 to request that Nate would come to our home for a home or room makeover. This, for me, was a huge leap of faith and out of my comfort zone: asking for something I really, really, really wanted (Thank you Elizabeth Gilbert!). I also asked for it because I really believed, and continue to believe, that my family needed it on a much deeper level too.
This time I write to you out of my passion to give back to other women struggling with health issues and not getting answers. I write to you because I believe you are, in many ways, 'the' voice for women. Your show opens our hearts to social, political, emotional, spiritual, and health care issues and leaves us better people for it. You and your show bring me much joy and many 'ah-ha' moments.
Last night, while watching one of Dr. Oz's episodes on tape, I had an 'ah-ha' moment of absolute 'inner knowing' that I had the perfect opportunity to engage in my passion.
What compels me to write today is the story about the woman who had been having symptoms of diarrhea, fatigue, blood in her stool, etc. One day she watched Dr. Oz on your show and knew in her gut (no pun intended!) that she had colon cancer. Her story was powerful for many reasons. Firstly, your show gave her the tools and information she needed to advocate for herself. Secondly, she followed through and did advocate for herself (and literally saved her own life).
Thirdly, her words raised one of my most passionate health concerns for women. Her comment that she 'had been doctoring for some time' and had continuously been misdiagnosed is what compels me to write to you. She did not go into detail, but as a younger woman I wonder if she wasn't completely taken seriously? I wonder how long that cancer had been growing in her before she got the proper diagnosis (and only because she saw your show)? I wonder if she had been told it was 'just' Irritable Bowel Syndrome or stress?
I am writing because, as a patient myself for the past ten years, this woman's words rang true on a deep level. Before getting sick I wanted to go into medicine as a health care provider. Now, I am using my experiences as a patient to fuel my passions. I am especially passionate about advocacy and awareness. I applaud you and Dr. Oz for teaching people to take care of their health, for teaching people how important our health is, and for making this a national (and international) issue through your show.
Still, I can't help but point out the crucial words this woman spoke about 'doctoring' for a long while. Only after she put the pieces of her own diagnosis together did she get the help she had deserved and needed all along. Had someone paid attention to her sooner would she have ever made it to Stage 3 cancer? Thankfully, she did not pay with her life in the end and is here to tell her story.
I have been chronically ill now for 10 years. I wrote in a fair amount of detail to you about my situation my November 2007 letter to you and Nate. In short: every day is an absolute struggle; I am home bound; I feel sick all of the time; I am dependent on others for much of my care; I cannot engage in the activities I love most. I am 32 years old. I want more than anything to be out in the world working, being married, being a mom, and just living my life in the many ways I had imagined. I do not know what it feels like to wake up and feel 'alive' in my own body.
I passionately believe that if doctors had listened to me over 10 years ago when I first became sick I would not be in this situation. We often go to the doctor with the mindset that if he/she tells us 'everything is okay' or 'it's nothing to worry about' we should believe them and let it go. Instead, we must become advocates for ourselves and we must trust our gut as the woman with colon cancer did.
When I first became ill, I was dismissed as a 'young woman who was depressed and anxious and not ready for the 'real world' post-college'. I cannot even begin to count how many doctors I have seen in the past 10 years. I persisted year after year after year. Finally in 2004, more than SIX years after becoming ill I found a doctor willing to do the puzzle work needed to solve my case.
I have now been diagnosed with Autonomic Nervous System Dysfunction caused by Chronic Lyme Disease. While awareness of these particular illnesses is crucial and potentially life-saving to millions of people, in this letter my actual diagnoses are not as important as what happened to me and what happens to countless people, especially women, day after day after day. We are continuously dismissed and not taken seriously, especially as young women. All of my early symptom profile pointed to acute Lyme disease, yet no one mentioned it as a possibility to me. Instead I was handed Zoloft or Prozac over and over again and sent on my merry way.
I advocated for myself as much as I knew how. I did my research. I got multiple opinions. Still, I am convinced, had someone really listened to me and diagnosed me early on with Lyme disease I would be healthy now.
I want women to know that they must get second, third, fourth, fifth and even fiftieth opinions. I want women to know that they know their body better than any doctor. I want women to trust their gut. I want women to fight for what they know to be true.
My hope in this world, is that because of my struggle and the struggles of others like me, NO ONE will ever have to suffer, struggle or go undiagnosed as long as I did.
I continue to hope for healing, but the road is one heck of a hard one to travel.
In many ways, I was one of the lucky ones in that I had 1. access to health care that I needed and wanted, 2. I had an education to help me sort through all of the medical jargon on the Internet and from doctors, 3. I had financial support from my parents, 4. I the emotional support of family, and 5. I found one of the best and most amazing doctors in the country to 'hold me in the palm of his hand' and give my medical case the best of care. So many people in our country don't have these skills and resources--and I cannot even imagine how many of them are going untreated or misdiagnosed.
You often do shows on illnesses such as cancer or living with disabilities--but being a young woman who is chronically ill is a completely different and unique physical and emotional experience. I hope that you will someday look at the lives of young women who have lost the dream of what life would be to illnesses such as these.
If anyone has the power to teach women to advocate for themselves and to keep 'doctoring' aggressively so that none of us end up like me or many of my friends whom I have met through support groups, it is you. I have been a part of the world of illness for 10 years now and have travelled this road with many other women who have had similar experiences to my own. In this letter, I speak for them and all the the other women out there who deserve to be heard.
After my own battle and being a part of the lives of others with chronic illness, what I can say I know for sure is this: I believe that women (children and men also, but more often women) are going undiagnosed, misdiagnosed, or dismissed every single day in this country. I believe that millions of women are suffering unnecessarily as a result. I believe passionately in making my life a blessing by trying to help others avoid the suffering, struggles, misdiagnoses, and mistreatment that I did. No one should have to wait six years for a doctor to pay attention to them and to try to find the right diagnosis (even if it is a difficult one). We as women have to be our best advocates. We have to trust our gut. And on a larger level, we have to call on the medical world to honor us and to stop failing us.
The first time I wrote to you I asked you and Nate for something I needed and wanted. Now, I ask you and Dr. Oz for something that the women of our world need. The Talmud says, "To save one life is to save the world." Dr. Oz saved that woman's life, and probably the lives of many others through his shows. You have saved the lives of countless women through your work on the show, through your work in South Africa, and through the Angel Network.
I believe that by sharing this often untold side of illness of which I speak, the two of you can continue to save women's lives around the world and help us to save our own lives.
Thank you. Bravo to you and Dr. Oz for taking on what is one of our most sacred blessings: our health.
With gratitude,
Emily
http://www.adancinglight.blogspot.com/
(my blog about living with chronic illness)
http://www.dinet.org/
(a look at Dysautonomia)
http://www.openeyepictures.org/underourskin/index.html
(a look at a new documentary on the health crisis of Lyme disease, including extensive links to resources)
