Autoimmune Disease: A Road That Doesn’t Need To Be Walked Alone

The American Autoimmune Related Diseases Association (AARDA) estimates that approximately 1 in 5 of us suffer from one or more of the 140+ diseases classified as autoimmune in nature. That’s approximately double the number of people who suffer from heart disease, and four times the number of people affected by cancer.  And yet, having an autoimmune disease can be tremendously isolating.  We feel like we are alone, that no one can understand what we’re going through, and that we must soldier on by ourselves.

Enter the autoimmune protocol (AIP).  No other diet can boast even close to the enormous numbers of anecdotal success stories out there of people mitigating and even reversing their diseases.  It’s beginning to be validated in the scientific literature, and more and more doctor’s offices are recommending The Paleo Approach to their autoimmune patients.  This approach has tremendous therapeutic potential; but here’s the thing:  it’s hard to eat so differently from our peers.  Any specialty diet or food allergy/sensitivity can be isolating in itself.  And, for some of us, following the AIP can create just as much of a sense of solitude at the diseases that forced us down this path.

And social isolation isn’t good for us.  In fact, scientific research confirms that a feeling of connection is just as important for our health as not smoking, being a healthy weight, and being active.  Social isolation and loneliness correspond with increased risk of morbidity and mortality; and conversely, a strong social support network corresponds with decreased risk of disease and increased longevity.  The mechanisms behind this are discussed in detail in this post.

Having a strong social network provides a huge range of benefits.  In terms of physiologic responses, the feeling of connection causes changes in hormones that directly improve our health, including regulating both cortisol and oxytocin (see this post).  There’s practical benefits as well:  it can make all the difference to have someone you can count on to watch your kids, pick something up at the grocery store for you, or talk to when you’ve had a bad day.  Research shows that having a close inner circle of 8 to 10 people that you can depend on and confide in is optimal.  Just knowing that you have people who are there for you, just feeling connected to even a small handful of people whom you trust and love, can make a huge difference in your ability to cope with, and heal from, chronic disease.

It’s also crazy helpful to know someone going through something similar, whether dealing with the same autoimmune disease or working hard to implement similar diet and lifestyle priorities.  Someone who “gets it”, to bounce ideas off of, to share in successes, to commiserate with set-backs, to understand our enthusiasm, and know how we feel before we say a word–whether or not this person (or persons) is local to us, part of our inner circle, or whether we’ve ever even met in person is irrelevant.  Nothing can replace this kind of kinship in a health journey such as those of us with autoimmune disease face.

So, how do you find this community?  Where do you meet those people walking a similar road to yours, with whom you can share this journey?  Where do you find experts to guide you, answer your questions, and places where you know you’re not the only one? I’ve compiled my favorite resources for you, representing a range of ways to connect, meet, interact, and get informed.

Facebook Support Groups

Facebook groups are a great way to meet people in a virtual and safe space, i.e., from the comfort of our homes without bothering to put on makeup! Facebook groups are also great communities of people, many of whom are likely to share some similarities with each individual’s situation, have favorite resources to share, and/or be willing to answer questions or simply show moral support.  Here are active groups, some of which center around the autoimmune protocol, that are all great communities:

• The Paleo Approach Community
• AIP Support Group on Facebook 
• Autoimmune Paleo Recipe Group on Facebook
• Asian Paleo Autoimmune Protocol
• Autoimmune Arthritis Alternatives
• Autoimmune Moms

• The Girlfriends’ Guide to Hashimoto’s

Instagram Accounts

Instagram may seem like a strange place to find community, but in fact, simply reading the comments on posts (and maybe contributing to them too) can be an amazing source of great people to connect with!  Not to mention, all of these people are knowledgeable AIP-ers too!

@thePaleomom @autoimmunePaleo @beyondthebite4life @enjoyingthisjourney @lauravein @donteatthespatula @healing_family_eats @eat_heal_thrive @joromerofood @hewontknowitsPaleo @squirrel_kitchen

@thebaconmum @grazedandenthused @sweetpotatoesandsocialchange @wholelifefullsoul @truenorthaip @itsme.charlotte @adventuresinpartaking @meatified @acleanplate

Podcasts

Listening to a podcast can both provide answers to burning questions, but also provide an inexplicably intense experience of “I’m not alone!”.  Here are my favorites:

• The Paleo View
• Phoenix Helix Podcast
• Autoimmune Adventures 

Youtube Accounts

These video podcasts are amazing resources, and the feeling of connection can be even more intense when you can see someone’s face!

• The Autoimmune Connection

One-on-One Help

Sometimes friends, the internet, and the best books are still not enough to successfully troubleshoot the autoimmune protocol.  Here are great places to find an expert to work with one-on-one to give you the best chance of success on your health journey.  All of these experts can work with you long distance too!

• The Paleo Mom Consulting
• Holistic Wellness Health Coaching 
• Joanna Frankham Coaching

Books

Whether you need a science-based guidebook or a cookbook teeming with ridiculously delicious recipes, this is the current collection of AIP (or close to AIP) books out there:

The Healing Kitchen (Available for pre-order) The Paleo Approach The Paleo Approach Cookbook The Autoimmune Paleo Cookbook The Alternative Autoimmune Cookbook

Nourish He Won’t Know It’s Paleo The Autoimmune Solution The Wahls Protocol The Autoimmune Paleo Breakthrough

Organizations

Not only can organizations provide resources unavailable most other places, they can also be great sources of information, referrals, support groups, and a place to meet peers.

• AARDA

 AIP-Approved Bloggers

The following bloggers all follow the version of the autoimmune protocol presented in The Paleo Approach, and are all excellent resources for inspiration, commiseration, practical tips, expert advice, recipes, meal plans and more!

A Clean Plate A Squirrel in the Kitchen Adventures in Partaking Anne Angelone Autoimmune-Wellness Autoimmune Strong AYCE to Better Health Backcountry Paleo Beyond The Bite Comfort Bites Don’t Eat the Spatula Eat Heal Thrive Emotional Autoimmunity Enjoying This Journey Field Notes on Healing Fresh Tart Grazed and Enthused Gutsy By Nature He Won’t Know It’s Paleo Heal Me in the Kitchen

Healing Family Eats Heartbeet Kitchen La Chica Paleo Lichen Paleo, Loving AIP Meatified Nutrisclerosis Nutrition is Medicine Phoenix Helix Simple and Merry Slightly Lost Girl Sweet Potatoes and Social Change The Paleo PI Whole Life, Full Soul Zesty Paleo

Meet-up Groups:

Ready to actually go meet people in person?  There’s an astounding collection of AIP meet-up groups across the globe!!!  Special thank you to Mickey Trescott and Angie Alt of autoimmune-Paleo.com for compiling this list and giving me permission to share it!  Not only do these gals have an amazing website, but they continuously post updates to this list, so make sure to check out their site regularly!

Midwestern US: Ohio AIP Group Chicago-Midwest AIP Group Iowa AIP Group Minneapolis/St. Paul AIP Group Kansas City AIP Group Northeastern US: NE AIP Group NYC AIP Group Philadelphia AIP Group Vermont AIP Group Southeastern US: Mid-Atlantic AIP Group North + South Carolina AIP Group Alabama AIP Group Puerto Rico AIP Group East Tennessee AIP Group Western US: Sacramento AIP Group Portland AIP Group Seattle AIP Group SoCal AIP Group NorCal AIP Group Denver AIP Group Boulder AIP Group: Alaska AIP Group: San Francisco Bay Area AIP Group San Francisco AIP Group San Diego AIP Group Idaho AIP Group Santa Cruz AIP Group

Southwestern US: DFW AIP Group Central Texas AIP Group Houston AIP Group Arizona AIP Group Northern New Mexico AIP Group Canada: Canada AIP Group Ottowa AIP Group Vancouver B.C. AIP Group Europe: European AIP Group Netherlands AIP Group Belgium/Netherlands AIP Group London AIP Group UK AIP Group Finland AIP Group Germany AIP Group France AIP Group Spain AIP Group AIP Info Europe Worldwide: Australia AIP Group New Zealand AIP Group South Africa AIP Group

 

Take-Home Message

I hope this collection of resources will help you on your health journey.  As one final sentiment, I encourage you to reach out, whether it’s commenting on a thread in a Facebook group, or joining a local meet-up group.  Connection is worth stepping outside your comfort zone to achieve.  And, if you’re someone who has found your community and support, I encourage you to look around you to see who else you know could use a boost, and reach out to them.