March serves as an awareness month for Autoimmune Disease and Related Conditions. Although this serves as a wellness blog, advocacy and awareness for conditions, particularly those that may be under-served in traditional medical models, are still areas I feel are important to incorporate. Due to personal and professional impact, I’m including this into my blog this month.
See the bottom of the post for another way in which you can provide support.
I credit the New Yorker for publishing a few personal accounts over the last few years highlighting path or circumstances from those living with autoimmune related conditions. The 2013 article “What’s Wrong With Me?” by Meghan O’Rourke provides an insightful look into a journey with autoimmune dysfunction. Those with any number of these conditions will certainly find clear areas of relation to her story.
An interesting caveat presented in “What’s Wrong With Me?” is the fact that people may not understand how best to support research and advocacy for these conditions. Within our system of care and related infrastructure, there is often a misguided focus on specialties or specific disease classifications. In this case, those would be examples such as lupus, celiac, Crohn’s disease, MS (multiple sclerosis), rheumatoid arthritis, and those affecting thyroid regulation such as Hashimoto’s or Graves’ disease.
However, there are upwards of 100 conditions that can be the result of a harmful autoimmunity state in the body. (The Autoimmune Related Diseases Association maintains an A to Z list). Many of which have overlap and/or common root causes. Also, manifestation of an autoimmune condition can vary from one person to the next and is thought to be considerate of “bio-indviduality.”
Unfortunately, variability in manifestation can contribute to difficulty with regards to timely diagnosis. Diagnosis is typically handled through testing and measurement of autoantibodies, which are used as clinical markers to classify or predict a disease (Eggert, Zettl, & Neeck, 2010). Symptoms typically present as vague and could include fatigue, chronic low-grade fevers, muscle and joint aches, or rashes (Campbell, 2014).
Leading up to a diagnosis, is a multi-factorial “soup”, so to speak, of circumstances. A genetic disposition may be present, but it is thought that lifetime exposures play a role in impacting whether or not a condition manifests or not. “Exposures” encompasses a range from environmental, physical or mental stress, and infectious agents. In addition, onset of a condition could be indicative of underlying conditions such as intestinal permeability or excessive chronic inflammation (Campbell, 2014).
This further leads us to “chicken vs egg” discussions in science and it also presents a paradigm shift in how we are addressing the category of disease. In this case “autoimmunity” versus a specific diagnosis resulting from autoimmune dysfunction. However, in actuality, underlying inflammation or cellular dysfunction versus a specific diagnosis of any kind.
For the would be autoimmune related diseases and conditions supporter, this could present some confusion. Three simple suggestions are as follows;
Understand care models within systems and those of independent health practitioners. If your knowledge isn’t great, take a pause on donating money. By all means I’m not promoting a withdrawal of financial support, but do some homework and don’t get distracted by fancy color schemes, ribbons, and other advocacy tactics.
Talk to those living with these conditions or reliable practitioners that treat them. I suggest this mainly to understand the layers to the conditions. To further illustrate this, consider the example of Tom O’Bryan. His team recently broadcasted an impactful series Betrayal, which detailed many stories of those with autoimmune related conditions. Purchases of the program went to support for children living with Celiac who may be experiencing mental/emotional stress due to social isolation. Clearly this is a top of mind problem for the children or the loved ones that support them, but how many people external to the spectrum would have thought of this? …and, are the research and advocacy agencies addressing these issues with fair weight?
Support those with conditions in other ways, particularly in the mental/emotional area and lifestyle behavior spectrum. Response to a diagnosis may require significant behavior change and due diligence will be needed. This may present avenues of going against the norm, for example, going to a super bowl party and replacing crock pot nacho cheese with some sort of super food just so there is something on the table. Human behavior change is a tough cookie and social support matters! Be sure to not make a big deal about it putting the person on the spot, but find ways to be inclusive of the person.
The list can easily continue. Feel free to share interesting projects for which you are aware in the comments. As a final note, I will be making a relevant donation at the conclusion of the month.
Ashley L Arnold, MBA, MPH is a lifestyle health educator and coach who supports clients to channel authority over their health, well-being, and overall vitality. Offering health education approaches and 1-on-1 coaching modules, she gets them out of excess weeds of information and inconsistent practices that don’t get desired results. Through helping people focus on the right applications paired with appropriate consideration for bio-individual facets, they become stronger, more confident self-advocates for their health. Bottom line, they will surpass challenges, embrace healthful living with ease, and, best of all, feel a greater sense of empowerment and more energy!
American Autoimmune Related Diseases Association (2014-2016). Autoimmune Info, List of Diseases. Retrieved 2016, from AARDA – American Autoimmune Related Diseases Association: http://www.aarda.org/disease-list/.
Campbell, A.W. (2014). Autoimmunity and the Gut. Autoimmune Diseases, 2014, 12. Retrieved 2016, from http://doi.org/10.1155/2014/152428.
Eggert, M. Z., Zettle, U.K., & Neeck, G. (2010, May). Autoantibodies in autoimmune diseases. Current Pharmaceutical Design, 16(14), 1634-1643.
O’Rourke, M. (2013, Aug 26). What’s Wrong With Me? The New Yorker. Retrieved 2017, from http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me.