(Watch the full video associated with this post.)
Some people live with an autoimmune disease for years or even decades before receiving the correct diagnosis. These patients go to as many as 20 different doctors in the healthcare system looking for answers, yet end up frustrated, misdiagnosed, and more confused than ever.
Why? Medicine lacks both an understanding of the issues underlying autoimmunity and how to effectively deal with these conditions even with a diagnosis.
In fact, unless the autoimmune disease has fully progressed to debilitating symptoms, it can be difficult to detect during annual physical exams. Standard blood work and chemical panels come back looking normal, and the patient is often told nothing is wrong with them.
This confuses patients who don’t understand why they’re experiencing pain, brain fog, and other symptoms when they’re told they’re “fine”.
While this is a difficult situation to be in, there are strategies to help you navigate the healthcare system while you search for a correct diagnosis.
The Three Stages of Autoimmunity
Autoimmune diseases can be difficult to detect because they typically progress in stages.
- Stage 1 – Silent Immunity Stage.
This is the initial stage when the autoimmunity is first developing and the body begins producing antibodies against its own tissue. These antibodies might appear on blood work, but the patient experiences no symptoms.
- Stage 2 – Autoimmune Reactivity Stage.
The patient begins to notice symptoms as their immune system becomes more aggressive with the autoimmune attacks. The symptoms they experience depend on which tissue the autoimmune disease is targeting. However, the patient still hasn’t progressed to full disease and experiences no clinically noticeable loss of tissue.
- Stage 3 – Autoimmune Disease Stage.
The disease has fully progressed and there is clear destruction of tissues, deformity, and change in effective functioning of bodily systems.
Barriers to an Autoimmune Diagnosis
Many people between stages two and three do not yet have major tissue destruction. Therefore, when they walk into the healthcare system looking for answers, doctors dismiss them as “fine” and tell them everything is normal – but it’s not.
Research shows they have predictive antibodies. Once positive antibodies show up in a patient’s blood work, it’s just a matter of time until the autoimmune disease comes out without preventive strategies.
So why aren’t doctors looking for them?
Well, it’s not intentional — it’s the result of a faulty system. Tests to detect antibodies can cost hundreds of dollars, and insurance companies often won’t cover them unless the patient displays obvious signs of a full-blown autoimmune disease.
The other problem is the medical community’s limited knowledge of autoimmune conditions. Medical education provides minimal learning about these diseases, so practitioners might not understand the different stages or that a patient can be stuck in stage two for a decade or more.
Even after diagnosis, most doctors are not aware of evidence-based strategies for managing these conditions to slow progression of the disease or drive it into remission.
Tips for Navigating the Healthcare System with an Autoimmune Disease
- As frustrating as it is, don’t expect a diagnosis right away. It could take many years and multiple professionals before a proper diagnosis, but knowing this ahead of time will prevent you from becoming discouraged.
- Share your knowledge and concerns with your doctor. If you suspect you have an autoimmune disease, bring it up and ask to have your antibody markers checked.
- Give a detailed family history to your healthcare professional. These diseases often have a genetic link, and it can help put the possibility on your doctor’s radar.
- Learn how to effectively manage your disorder. Doctors may prescribe anti-inflammatories and other medications for severe cases, but most of the time diet, nutrition, and lifestyle changes successfully reduce flare-ups and improve quality of life.
- Recognize that autoimmune diseases require a personalized approach, and that takes time. Different patients will have completely different triggers, even if they have the same autoimmune condition.
- Build your own healthcare team to assist with all aspects of your disease. These should be professionals across different specializations who will listen to you and help monitor your condition. Perhaps you have a great family physician, but you also have a doctor who helps manage your exercise regimen or diet and nutrition plan.
Autoimmune diseases are difficult to diagnose because:
- They progress in stages.
- Antibody testing is expensive and often not covered by insurance companies.
- Many healthcare professionals lack general knowledge about autoimmunity.
However, patients can use strategies to navigate the healthcare system.
- Be patient when searching for a proper diagnosis.
- Manage the disease by making appropriate changes to your diet, nutrition, and lifestyle.
- Build your own healthcare team.
Learn how to manage your autoimmune condition
To feel and function your best, it is ideal to learn how to manage your autoimmune condition using evidence-based strategies that you won’t learn in the standard health care model.
I have created a course to do just that, based on more than 20 years of practice, review of the research, and conducting my own research.
To learn more, check out my Autoimmunity: Solving the Puzzle online, self-paced course.