Imagine suffering chronic illness and feeling terrible — just awful–every day. And imagine having to muster up the strength to navigate the medical bureaucracy day in and day out. And maybe not getting answers. Or help.
I know far too many people with chronic illness who feel they have nowhere to turn. Which was why what Amy Stenehjen MD does as a patient advocate is so important. Her practice is unique and focused directly on patients with some of the toughest medical challenges. Did I mention that she, too, suffers chronic illness? That gives her a unique outlook and one other physicians may not have.
If you or someone you love suffers from a chronic illness, you’ll want to know about Dr. Amy’s services. AlsoBut I’ll let her tell you about them and then be sure to see her website.
What made you decide to become a doctor? In what specialty?
My Mom was diagnosed with Lupus when I was two years old. I remember at an early age accompanying her to doctor appointments. It was very clear to me, even at this young age, that kind and thorough doctors helped her feel positive about her situation, whereas those doctors who were abrupt and hurried caused frustration and sadness. It was at this young age that I decided I wanted to be one of those kind and thorough doctors someday.
I specialized in an area of medicine called Physical Medicine and Rehabilitation (PM&R) that approaches the patient from a holistic viewpoint, not only diagnosing and treating medical conditions, but also working with the patient on addressing all aspects of health and wellness.
At what point in your career did you develop a chronic illness,and how did that change your life and your career?
After medical residency, my husband and I moved to the Twin Cities where I worked as a PM&R physician at Park Nicollet Clinic and later Physicians’ Diagnostics & Rehabilitation, specializing in the care of patients with musculoskeletal injuries, Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, osteoarthritis, neck and back pain, chronic pain, and autoimmune related joint disease.
In late 2009, my life began to shift dramatically with the presentation of periodic and peculiar episodes of a high fever, rash, swollen lymph nodes, sore throat, and debilitating fatigue. Each “fever episode” was followed by progressive shortness of breath. After the fourth episode in May 2011, I found I was experiencing shortness of breath and dizziness with even minor activities such as walking a few steps and consequently, took leave from my medical practice.
Completely perplexed as to the cause of this mystery illness, my doctors in Minneapolis referred me to the Mayo Clinic in Rochester, Minnesota. Stumping physicians in numerous specialty groups over several months, I eventually received a diagnosis of Dysautonomia specifically Postural Orthostatic Tachycardia Syndrome (POTS), a disease caused by damage to the Autonomic Nervous System which controls all the automatic activities of the body (including breathing, blood pressures, heart rate, and body temperature). Later physicians at the National Institutes of Health in Bethesda, Maryland determined the POTS was caused by a rare Autoimmune Periodic Fever Syndrome.
In 2012, I developed a constant headache and sore throat, associated with extreme fatigue. In addition, minor neurological symptoms I had experienced for years, began to dramatically worsen. After two years of feeling this way, I was diagnosed with a Chronic Epstein-Barr Virus (essentially chronic mononucleosis) and Lyme disease.
When my health improved in 2016, I created the health information website, Mastering Health & Happiness, and began planning for my recently launched private patient advocate business.
A patient advocate helps clients overcome obstacles in their health by providing guidance in a similar fashion as a personal trainer, life/health coach, financial advisor, or other “guides” whose expertise can help solve problems and avoid pitfalls. A private patient advocate is one that works for the client, rather than for an insurance company, medical clinic, or hospital.
As someone with chronic illness, did the medical landscape look any different than it did to you as a doctor that wasn’t sick? How did that lead to your innovative practice?
I spent 5 long, frustrating years searching for the answers I needed to address my complicated health issues. During this process, I found a significant lack of helpful, reliable, and accurate information to help guide me to the right doctors and to the answers I needed.
Though I learned a great deal about chronic illness in my medical practice, being a patient with chronic illness has given me a new perspective. I now truly understand the frustration, loneliness, sadness, and anger often associated with the search for answers when dealing with long-term illness.
When my health improved, it became clear I needed to use my experience and knowledge as a physician with a chronic illness to create a platform to provide strategies, resources, and tools for those struggling with challenging health issues.
Who is your “ideal” client?
My ideal client is anyone who is frustrated by illness and desires the help of a private patient advocate with any or all of the following:
• assistance in navigating the healthcare system to find the appropriate doctors, diagnosis, and treatment options
• input on more effectively managing illness, reducing flares, and improving quality of life
• tips for creating a more joyful life despite the daily challenges of chronic illness
Because my services are provided remotely, I can work with patients from anywhere in the United States. I have the most experience in the following illnesses:
• Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME)
• Autoimmune Disease
• Lyme Disease
• Chronic Joint Pain
• Dysautonomia, including Postural Orthostatic Tachycardia Syndrome (POTS)
• Chronic Epstein Barr Virus (CAEBV or CEBV)
• Chronic Headaches
• Restless Leg Syndrome (RLS)
• Mast Cell Disease, Histamine Intolerance
• Neck or Low Back Pain
• Chronic Vertigo/Dizziness
How do you work with clients?
All my services are provided remotely. I take the privacy of my clients very seriously and use special email, video chat, phone call, and fax software, all of which are secure and HIPAA-compliant. I also provide a secure, HIPAA-compliant Client Scheduling and Billing Portal.
I understand the ups and downs of chronic illness and know that certain times of the day are better for some and not good for others. Therefore, I offer a very flexible appointment schedule.
Many sick people have budget concerns.
Private Patient Advocacy services are not covered by insurance. This avoids any conflict of interest in providing clients with the best services as a personal advocate, recognizing that advocacy directed by insurance companies, rather than health professionals, may not always be in the client’s best interest.
I make every effort to fairly structure my fee based on my client’s situation and the objectives he/she wishes to accomplish. I want to make sure my clients are maximizing the return on their investment and that I am helping them achieve their goals for a price that equally matches this objective.
I offer a free introductory phone call to discuss goals and to determine if patient advocacy is the right choice. If a client decides to move forward, the price for the initial consultation depends upon the time required to perform the consultation and any additional work, such as medical record review. Consultation prices range from $160 to $420 and are determined by the client’s needs and health goals.
After the initial consultation, I provide a full summary of steps my client can take to achieve his/her goals. I provide thorough summaries which can be followed independently, or the client can hire me to accomplish some or all the steps.
If I am hired for ongoing work, a portion of the consultation fee goes towards future sessions. I also provide discounts on bundled sessions.
Are other physicians doing this?
There are others working as private patient advocates. I am not aware of another physician with chronic illness who is working as a private patient advocate, so I may very well be unique in that regard.
If you’d like an introductory consultation with Dr. Amy, see her excellent website, where you’ll also find amazing resources. To get FREE SHIPPING on our Healing Affirmation Deck or Guided Journal for Healing enter the discount code AMY upon checkout.