Editorial: Letter to President Obama
by Elizabeth Chalker
Dear President Obama,
Hi, my name is Elizabeth Chalker, I am 39 years old and writing to you about the Healthcare Reform. I would like to share my story with you in hopes to put an even more human face on the healthcare crisis in America. I am a single woman who was very athletic, outgoing and involved in my community, family, church, career, and friends before becoming debilitated with late stage Lyme disease and endometriosis.
I am three chapters of my dissertation short of a dual PhD in Psychology with areas of focus in Neurology and Forensics. I also have a Masters degree in Psychology with the same areas of focus, and an Addictions Certification which is the accumulation of 6,000 supervised work hours, ten graduated level courses and a State Board exam. I started working in the field of psychology at age 18 and continued until I was 33 when I could no longer work due to the level of debility in my body from Lyme disease.
Throughout my adolescence, I suffered tremendously with severe pelvic pain, chronic headaches, nausea and unexplained fatigue. I sought the help of physicians and health care providers to get to the root of the symptoms from high school through graduate school and beyond. I was unable to complete my dissertation due to level of debility from Lyme disease, and also had to close my private practice. I lost my livelihood. In my career, I worked with families, violent juvenile offenders, and at-risk children and adolescents. My years of practice included working in psychiatric hospitals, schools, prisons, detention centers, homes, community centers, my church, the court system, and private practice. I have many dreams and goals both personally and professionally, which have been largely neutered due to the debility from Lyme disease and endometriosis, yet mainly from not being able to get the medical help I need to treat these diseases properly.
I was diagnosed with endometriosis at age 22, through surgery. Finding appropriate and affordable healthcare has been a major challenge. Much of the healthcare I needed, including surgeries for management of the endometriosis, came out of my pocket. I suffered from symptoms of endometriosis and beyond, for many years with no further diagnosis or help aside from mainly being prescribed pain medications and surgery. I knew something additional to the endometriosis happening in my physical body; however, because I was so young and vibrant, doctors did not take me seriously. I was, however, diagnosed in 1994 with Lyme disease, given a course of antibiotics and told I was cured. I was not cured and my health continued to decline.
I went from doctor to doctor searching for answers to help me regain my health. After years and years of misdiagnoses and being told that 'I look fine' and that there was nothing wrong with me other than the endometriosis, I was finally properly diagnosed in 2005; late-stage Neurological Lyme disease with many co-infections, and systemic endometriosis that the doctor at the time felt was a part of the Lyme disease. Since that time I have been searching for a doctor who will take me on as a patient and treat me in what they term as a 'very complicated case'. Complicated due to the years of being misdiagnosed while the Lyme and other co-infections wreaked havoc on my body as a whole, affecting all of my organ systems to the point where I am currently in bed most of the time, on prescription pain medication due to the chronic and severe level of physical pain from the diseases, and not able to function in the day to day performing of even the simplest of tasks such as cooking and laundry.
My finances are depleted from years of misdiagnoses and improper treatments. I lost my health insurance and have not been able to get more due to pre-existing conditions.
I was a high functioning individual, motivated, ambitious, well rounded and was a contributing member of society. I had a full life and was well on my way to continuing to make positive contributions both personally and professionally, to society and the world as a whole in the research and career I was participating in working with the juvenile population. My work included helping the youth of our nation to be contributing members of society, helping them to gain insight into their person, their passions, their talents, that they could fulfill all they were purposed to be in this life, etc.
I have not been able to get the necessary medical help I need to save my life and help me regain my health.
Lyme disease has ravaged my body; the health care industry has taken my life by not helping me get the medical help I need to treat the diseases. I have exhausted my financial resources and other supports as a result of years of being misdiagnosed and given improper treatments as a result, from the nine surgeries I have had to undergo for endometriosis; and, as a result of having to consult with specialist after specialist searching desperately for doctors to 'agree' to take me as a patient and help me medically. Presently, here I sit at home day in and out for six years now of not being able to work or have much quality of life at all. My days consist of sitting alone (with my faithful dog Symon) in a dark apartment due to severe light and sound sensitivity from Lyme disease. I cannot get the help I need medically or in the home due to financial restraints/depletion and a lack of education about late stage Lyme disease here in Florida. I was not approved for disability for Lyme disease, I was partially approved for endometriosis. However, I do not have full benefits and the monthly checks I receive do not even cover rent.
I do now, however, have a team of doctors who are willing to take my case and treat me medically. I live in Florida; the team of doctors resides between Reno, NV, and Seattle, WA. The only other option for the kind of medical care that I need is in Switzerland. I have to relocate to Seattle, WA where the daily IV and oral treatments will take place. Because my whole body is now affected by Lyme after going so long without proper treatment (as a result of being misdiagnosed due to a lack of education in the medical profession), I will need to have treatment with different specialists and will have to have at least two surgeries when my body is strong enough to endure them as well. All of the treatment is out of pocket. I do not have insurance, am told I am ‘uninsurable' or that I can get insurance but it will not cover the diseases I have been diagnosed with, or that the
premiums will be so high they will be unreachable for me. The doctors who treat the diseases I have do not take insurance for the most part either, as a lot of treatments necessary for successfully treating Lyme disease are alternative methods.
I would like to know what your healthcare reform will do to help someone like me.
What can we do in this nation so people will not have to suffer as I am? What I am suffering is a grave injustice. What I am suffering could have been avoided if given the proper diagnoses and treatment in a timely manner. What I am suffering is unnecessary if the resources to get the medical help I need were available to me. I am laying here literally dying a very slow, agonizing death, alone the majority of the time, and without medical help I need that is available, that could save my life and help me regain my health, because I do not have the finances to receive it. Please help.
There are others such as myself I am sure. We are the ones who have fallen through the cracks due to age and stigma of, and lack of appropriate education regarding, Lyme disease. I am a young woman and have been told many times by companies, charities, individuals, and disability, that because I am not a minority, am too young, and do not have children, that there are no further resources for me to help meet my needs. I have been told that if I had a family of my own, if I was older or a child, if I was a minority . . . then resources would be available to me.
How in a nation of equality, is such an injustice permitted?
Please help me save my life, and please help others in similar situations as mine to save their lives. Please make the healthcare reform one that will include benefits for individuals such as me…. Do not allow us to continue to be a population who falls through the cracks and loses our lives and livelihoods because we cannot get the help we need medically for serious, debilitating, and potentially fatal physical diseases. Do not allow my (our) talents, gifts and positive contributions to society to continue be halted and hidden from this world as a result of medical treatments for
physical diseases being denied us.
Thank you for your time in reading my letter. I hope and pray with all of my heart that you will consider all I have shared and allow it to sink in with empathic understanding, following with some action taken to help.
I am a very real person who had a very promising future, and still do if I can get the medical help I need to save my life and help me to regain my health. Do not allow my life to continue to have a price that is virtually nothing by allowing me to continue to not be able to get the resources I need to get the medical help necessary to save my life and help me to regain my health. I want to be well more than anything so that I may continue on and complete my course here that I was purposed for, in helping and serving. Please help me to help myself, by making the resources needed available to me and others in a similar situation.
Respectfully Yours,
Elizabeth Lane Chalker
