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.
Meet Dr. Amy.
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
• Fibromyalgia
• 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
• Candidiasis
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.
This is a much needed service so thank you for introducing Amy to us Carol. Chronic illness is definitely a time when we need some extra guidance.
Private patient advocate is something that i heard the first time. This article made me understand it and know the importance and advantages of it. I hope it could help lots of patients
Hello Bethel,
Thank you. I hope so as well!
I am so happy she is providing empathetic care and services at her practice. She will be making many people suffering with chronic care happy and it is wonderful on what she is doing in the medical industry!
Hello Kiwi,
Thank you so much for the kind comment!
Thanks for sharing this! I work in a hospital and am always interested learning new approaches.
Hi Ricci,
Thank you! I’m so excited to finally get to bring this service to others. 🙂
I’m learning so much about autoimmune diseases with my niece’s lupus diagnosis. Chronic illness such as these must be so discouraging, so it’s amazing she’s able to provide empathatic care for her patients.
Hi Heather,
I’m so sorry about your niece’s diagnosis. But so glad she has you as her aunt, so willing to learn about chronic illness!
I love that we have this option coming our way. Dealing with pain and illness is such a burden.
H Kita,
Thank you so much!
Now this is something I can get behind. Chronic illnes is the worst.
Thank you Sara! 🙂
I’m beyond the need for remote services, though I applaud your work. I’ve been in moderate to severe pain from a neck injury in 1993. Went through a very stressful 10 year work comp case, and was forced onto involuntarily Medical retirement at age 39 (now 55). I have no family or friends who can help me. The fatigue is so bad, I rarely get out of bed. I eat, but keep losing weight (75#, 5’3″). I’ve BEGGED for help
with ADLs from a few doctors, but they say I don’t qualify.
I have no fight or will left. Do you have any recommendations on how to find a good advocate to completely coordinate my care. (Dysautonomia, adrenal exhaustion/Addison’s, cervical Dystonia, TMJ, chronic pain, AI….). This has been half of my life with no signs of improving. My life came to a screeching halt when I lost the ability to work (not by my request). I’m so so WEARY down to my soul. My 2 remaining family members have cancer. I have lost all will to live and need someone to personally take over as a case manager did in work comp. Does this exist?
Chronic illness people without family or friends who are free to offer help are lost. There is no support.
Apologise for the lengthy comment. Crushing fatigue makes one loopy.
Thank you.
Dear Barbara,
I’m so very sorry for all you have been through. I understand. At my sickest, I spent years too sick to get out of bed. The act of eating was too tiring- I had to use pillows to support my head and arms just to get a few bites in. I want you to know you are not alone. Please don’t give up. There is hope.
Some patient advocates are able to act like a case manager, which includes the service of attending all of your appointments. You can go to this link and search your zip code. https://profile.advoconnection.com/search/
If you are not able to find someone this way, send me an email and I can do some more searching for you, [email protected]
Sincerely,
Amy
Pain is never any fun, especially chronic. Glad to see some advancements coming out way though.
I know all to well the struggle to continue on living a full life with a chronic illness. I have fibromyalgia and it has been a battle to figure out how best to manage it. I do not want to just mask the symptoms with a lot of pain medicine. It has been a lifestyle change that I am still figuring out. Having a patient advocate to go along this journey with would be amazing!
Hi Emily,
I’m very sorry for what have had to deal with regarding the Fibromyalgia. Please feel free to reach out if you ever feel patient advocacy might me the right option for you. I would love to be able to help out!
This is really amazing. I cannot imagine living with chronic illness, yet there are so many who do live that way. I am glad that there is a unique service available now to help those who live with chronic illness.
Hello Brandy,
Thank you for taking the time to read about my work and for taking the time to comment.
It’s not easy to deal with pain like this and it’s nice to know that aside from the traditional medicine we have this option. Amy sounds like a great person and one that’s easy to work with because she understands what you’re going through.
Hello Alison,
Thank you! I really appreciate your comment.
I wish there were more caring, and concerned doctors like Amy out there. Her patients seem to be in good hands!
Hello Amy,
Thank you for the kind words!
This sounds like a really unique service and something as someone who does suffer with chronic illness I would definitely be interested in looking into more thank you.
Hello Sarah,
Thank you. I’m sorry to hear that you suffer from chronic illness. I’m here if you’d ever like to look into patient advocacy. Thanks so much for taking the time to comment.
Chronic illness is always a difficult thing to face, especially when there are numerous. It’s nice to have someone understand.
Hello Cinny,
Thank you for taking the time to read my interview and to comment. I really appreciate it!
I really enjoyed reading this post. This is such a great interview. I love all of the work that Dr. Amy is doing.
Hello Tasheena,
Thank you so much! I really appreciate your kind words. 🙂
She is incredibly inspiring! My aunt suffers from chronic illness so I totally understand the frustration of not knowing what’s going on/how to help it.
Hi Lisa,
Thank you! I’m very sorry about your aunt. Chronic illness affects so many of us. 🙁
What a neat idea! I suffer from several sonic illnesses, and I had no idea something like this was available to me.
Hello Izzy,
I’m very sorry you suffer from chronic illness. I’m glad this article was able to bring awareness about patient advocacy. Please let me know if you would ever want to look into it for yourself.
My doctor DOES not care and that’s just about menial stuff, so I know the feeling – and it’s not a good one.
Hello Robin,
I’m very sorry to hear that. I’ve been there as well and it can be very frustrating.
Thank you for taking your own challenges in life and making them positive. My husband has CLL, that’s a chronic form of leukemia, and I have spread the word about LIST SERVES online, place where people with a certain disease can go and help one another. I hope you are familiar with those that apply to the people you help. You could be on the List Serve, possibly offering your services. The doctors who joined the CLL list serve provided invaluable serves to patients. Beth
Hello Beth,
I’m so glad you mentioned this. I was not aware of this option. Thank you so much!
This sounds interesting! I’ve been a long-time sufferer of chronic pain and it can get so frustrating when nobody can seem to help you. Thanks for sharing!
Hello Doria,
I’m so sorry for what you have gone through. Hopefully it helps some to know that you are not alone.
Thanks for sharing. I have a friend that has Lupus, and the dr she is seeing isn’t all that helpful. I’ll share this with her.
Hello Joanna,
Thank you! I really appreciate it!
I have a family member who has a chronic debilitating illness and we are so lucky it is in remission but it requires expensive medication and we are lucky it is covered. We need more physicians like her who really seem to care about resolving the chronic issues so many have.
Hello Melissa,
Thank you for commenting. I am sorry about your family member, but so glad that symptoms are in remission and treatment is covered.
This is definitely something that interests me. I do have chronic issues that I would love to work out a little bit better than what I have. I wish more doctors did stuff like this.
Hello Jeanette,
I’m so sorry you have to deal with chronic issues. I’d be happy to chat with you if you’d ever want to look more into patient advocacy. Thanks for commenting!
I suffer from issues but I choose to not like them affect me – While yes, they can be painful, it’s just as much a mental thing – if you choose to wallow in your pain, yes, it’s going to feel insufferable. A positive mindset makes everything feel better.
Hello,
Thank you for commenting. I am so glad you are able to control things with a positive attitude.
I’ve never known anyone that had a need for a service like this. Chronic illness can be difficult, I know a number of people that have dealt with them for years.
Hello,
Thank you for commenting. Yes, chronic illness can be so difficult. Thank you for reading about my work. I really appreciate it.
It’s not easy to deal with chronic illness and it doesn’t just come with age. People can definitely experience it no matter how old they are. Her dedication to what she does for her patients is simply amazing!
Hello AnnMarie,
Thank you for the very kind words. Makes my day. Yes, chronic illness can affect anyone, at any age. Awareness is so important.
Thank you!
This was a great interview. I can only imagine how it must feel like to live with a chronic illness. I am glad there are people out there to help.
Thank you, Amber. It helps to have people like you who are willing to take the time to think about it and learn more about chronic illness.
I love this practice. I love that she doesn’t take insurance to BENEFIT the patient. Wow, that sure says a lot about that industry. My husband has RLS, so I would love to get him to talk to her about it.
Hi Terry,
Thank you so much for the kind words! I would love to get to work with your husband. 🙂
There are so many chronic illness out there that it is scary. I know several friends who suffer from these different illnesses. Wonderful to have doctors who are committed to helping.
Thank you, Candy!
She sounds amazing and it’s nice that she works with patients not just to cure their ailments but to build their confidence as well. I agree, doctors that do not seem to care will make you feel terribly depressed and sad!
Thank you for the kind words, Karen. I do my best! 🙂
Thank you so much for sharing this! I have a friend with a chronic illness, and she hasn’t been able to find any relief. I’ll have to show this to her.
Thank you, Colleen! I really appreciate it!
What a unique service for those suffering with chronic pain and illness. I love that Dr. Amy can work with people all over the United States to help them get the care and understanding they deserve.
Ali,
Thank you! I am honored to be able to provide this service. 🙂