Tag Archives: autoimmune health

Finding Balance while Living with Autoimmune Related Conditions

March is autoimmune disease awareness month.

For those of you who know or follow me, you are likely well aware that living healthful and well is a key focus area for both my personal life and professional niche.  This may be in spite of having chronic conditions or underlying physiological dysfunction.  The fact that I carry my own diagnosis and am a fit to “autoimmune wellness warrior” can present certain idiosyncracies to maintaining balance.

Professionally, I work with people to live better, well, and most healthful, while personally, I am often holding on tight while navigating through turbulent, bumpy roads all while working to keep it all together!  Naturally, it can give me greater ability to express empathy, but it can also leave me feeling that I have a massive case of imposter syndrome.

A few insights on autoimmune related conditions are as follows (more can be found via the AARDA):

  • Approximately 50 million Americans are afflicted with an autoimmune-related condition.
  • There are over 80 conditions confirmed associated with underlying autoimmune dysfunction and the list is growing.
  • Women are disproportionately affected.
  • Late or misdiagnosis has been common.
  • Despite supportive evidence for lifestyle interventions significantly influencing outcomes, immunosuppressant treatment is still common yet may result in devastating long-term side effects.
  • The body of research centered on effects from environmental factors and the manifestation of autoimmune-related conditions is mounting.

For people who are able to put autoimmune conditions into remission, a 3-5 year timeline is common.  This is typically curated through a “lifestyle-medicine” approach which will involve a range of shifts including dietary approaches, relationship with sleep and stress, reduction in adverse environmental exposures where possible, and a potential range of therapeutic related approaches to nudge the body closer to healthful homeostasis.  For many of us, like myself, complete remission may not be realistic, but a significant reduction in the severity could be possible.  Therefore, 5 years not just after a diagnosis, but from the time in which notable lifestyle changes are begun is kind of a relevant time to do a robust check-in.

This spring will mark 5 years since I have had a formal diagnosis for autoimmune related conditions, (which often cluster and may come with secondary conditions that are considered to be present as a result of the specific autoimmune condition(s) manifestation).  In many ways, things are going relatively well.  There may still be an occasional flare-up or mishap, but many of my symptoms have been significantly reduced, my antibody labs came back the best results I have seen since I started this journey, and I have indoctrinated the lifestyle changes to become my new normal without much mental anguish to think it all through.

Which brings up a good point.  As much as these conditions are physiological, there is also a chaotic dance in store for the mindset.  However, although sometimes haphazard with certain unexpected variables, it’s still one that can be orchestrated.  Therefore, a few wellness tips can also be rather impactful!

Manage expectations through letting go of perfect.  “Well” does not mean perfect.  Hey type A-ers, I’m talking even a little more closely to you.  Systems and plans can be fantastic for staying on track, but remaining flexible while having a sense of humor can also go a long way!

It’s ok to say No.  Not everyone is going to understand what we are dealing with.  It’s not personal, educate when it’s appropriate, but otherwise, let it go.  Time and energy are much better spent on other areas in which we can enthusiastically say “yes”.

Focus on the unintentional gifts.  For me, I have significantly more knowledge and perspective than I would have had otherwise.  Also, I have been able to shift various focus and responsibility to a more meaningful purpose.

A few other bloggers’ posts that are a little similar to this one that may provide further insight and inspiration.

Autoimmune Disease Warriors, About Us

The Advantages of Disadvantages

Why I Am Not an Autoimmune Warrior

 

Photo by Marion Michele on Unsplash

Wellness Wednesday: Autoimmune Disease Awareness

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.  I’m leveraging income from my Juice Plus and Tower Garden business to make this happen.  Please visit my websites for further information or set up a call with me to learn more.  I’ll include a follow up post about this in April.

REFERENCES:

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.