The correct medical diagnosis is key to receiving appropriate medical care without delay. With a delay in diagnosis comes a delay in intervention- often leading to the progression of the disease to the point where treatment options become limited and/or may no longer be effective.
When it comes to autoimmune diseases, reaching a diagnosis is often a long and challenging road ahead of many patients. Because of the nature of autoimmune disease (i.e. the body’s inadvertent or misguided destruction of its own cells, tissues and structures), it is of great importance that it is quickly and correctly diagnosed and treatment is applied, before damage becomes too extensive to repair.
Some numbers related to autoimmune disorders from the American Autoimmune Related Diseases Association (AARDA):
- 4.5 years is the average time taken to receive a diagnosis
- In that time, a person is expected to go through 4 doctors
- 8% of the American population is affected
- 75% of those affected are women
- More than 90 diseases are confirmed to have autoimmune origins
- At least 30 other diseases or disorders are suspected to have a strong autoimmune component
Autoimmune disease is difficult to diagnose for many reasons. Early symptoms are often very generalized and can also be mistaken for symptoms of more common health issues. There is no single definitive test to determine autoimmunity. Typical autoimmune marker tests do not help to narrow down which autoimmune disease may be present, but may be able to direct further investigation. Information required for a conclusive diagnosis requires a thorough personal and family health history, relevant lab tests and often some sort of biopsy to investigate and confirm abnormal cells or tissues and referrals to specialists such as a rheumatologist.
Gender and sex bias also contributes to the difficulty and length of time involved in receiving a diagnosis. Numerous studies have shown that women are more likely to be incorrectly diagnosed, fail to receive appropriate care, and tend not to be included in research and clinical trials, which leads to issues when attempting to apply data to clinical situations. Women are also less likely to be taken seriously by their healthcare provider and are at more risk for harm than men.
It should be noted that men are also affected by autoimmune conditions but less frequently. Disease progression and outcomes are variable (in general, and compared to outcomes in women).
Here are a few suggestions that may help to reduce the amount of time to receive a diagnosis:
- Be aware of your family health history- do any of your close family members (i.e. grandparents, parents, aunts and uncles, siblings) have a history of autoimmune disease or mysterious chronic conditions?
- Write out a health-focused timeline, taking note of any of the following: significant life events, major stressors or changes in the environment that seem to occurr close to the onset or aggravation of symptoms (i.e. a big move, renovations, loss of a loved one, etc.).
- Keep a copy of any lab results and other health reports so that you have them available when you go to see a specialist. Labs are usually forwarded before the specialist appointment, but in case that they weren’t received on time- you have a copy with you.
- Seek a second opinion and/or consider integrative care. This may mean seeking the expertise of a Naturopathic Doctor, or a health care practitioner trained in Functional Medicine who is able to order labs, or may have another method of accurately monitoring you during treatment.
- Know which lab tests to ask for. Asking the “right” questions is more likely to get to the right answers. Being an informed advocate for your health can be helpful to your medical doctor. They are often overworked and stretched thin across a full patient load and may not have the time to thoroughly discuss all options in a short visit. Depending on the jurisdiction, your Naturopathic Doctor may also be able to order lab tests. For example, Naturopathic Doctors in Ontario are able to order many of the same routine labs available to medical doctors, along with more specialized functional testing that a MD may not necessarily order.
Getting quickly and correctly diagnosed with autoimmune disease (when it is present) is important when trying to improve your health and reducing the amount or intensity of intervention (i.e. drugs and other treatment) required. It also alerts you and your health care provider to any additional health risks known to be associated with your particular health issues. The sooner you understand your health, the sooner you can begin to manage it.
American Autoimmune Related Diseases Association (aaarda.org)