There are few things in life that are not made better by the power of community. Good news is made better when celebrated by others and the burden of hard times is often lessened when shared with others. The power of community, when it comes to making difficult commitments, is evidenced by the popularity of addiction recovery programs, weight loss groups and even online support groups for everything from breastfeeding to the death of loved one. We, as people, are meant to be in community with others. So, it makes sense that recovering from a chronic illness and committing to the autoimmune protocol would be no different. That being said, its not always easy to find that community. Sometimes you have to create it.
When I first decided to try the autoimmune protocol I was alone. I had never known anyone who had done it, my family was still trying to come to grips with figuring out the standard paleo diet, and there wasn’t even much of an online community at the time. I lived in the south and spent a lot of my time immersed in a culture that prided themselves factory farming, casseroles, and who could make the best macaroni and cheese. Thankfully, I have an incredibly supportive family who read all of the information I sent them, educated themselves on the protocol, cooked for me at family events and, in the end, even ended up following AIP themselves. Unfortunately, they live hours away from me, so my day-to-day community looked different.
I had a few local friends who were open minded enough to listen to what I was going through and learn why my diet and lifestyle changes were important, they supported me when times were difficult and made life easier for me by socializing with me in a way that didn’t always involve food or by helping me cook AIP friendly meals when food was involved. These friends were true blessings to me in the early part of my AIP Journey and continue to bless me today.
Then, there were others who either through a lack of education or a fear of the unfamiliar, said terribly hurtful things or acted in ways that were far from supportive. People robbed me of the joy of no longer being bed ridden by berating me when I appeared after months of sickness, people accused me of being vain and just trying to lose weight through dieting, I even attended meals thrown “in my honor” at which I was unable to eat a single bite of food even after a full year of being on the autoimmune protocol.
Those moments were hard to handle, but what it taught me was that the people who care enough to support me also care enough to learn how to support me. That isn’t to say that the other people don’t care at all, it is just to say that they may not be in a place of being able to support you right now and that is ok. Everyone goes through different seasons in their lives and sometimes those seasons aren’t compatible with each other. That doesn’t mean that you have to lose those relationships, but it does mean that you have to look for your support elsewhere.
So how do you create a supportive community? By educating them. Now I don’t mean that is a derogatory way. This isn’t about you knowing more than other people, it is about you being vulnerable and honest with the people around you. People can’t support you if they don’t know how. Here are some tips I have found most helpful throughout this process:
- Tell People What it’s Like to be Sick: Most people with autoimmune diseases have had symptoms in some form or another for most of their lives. You are used to it because it is your life, so you may not talk about your symptoms regularly, but other people don’t understand that. When I say I have ulcerative colitis people either don’t know what that is or they think I must have diarrhea all the time. When I started telling people that for me, a flare meant having severe abdominal pain, debilitating joint pain and a lot of blood loss I found that people were a lot more open to understanding my diet and lifestyle changes. Don’t be embarrassed and don’t be shy, you aren’t doing yourself any favors by keeping secrets.
- Explain that AIP Is a Temporary, Personalized Elimination Diet: Unless you are at a restaurant talking to a waitress don’t tell people you have food allergies. With the way the media has been presenting food allergies lately, I have found that people just kind of roll their eyes at you if you tell them you are “allergic” to everything under the sun. Give them more credit than that and explain that you are temporarily avoiding certain foods so that you can reintroduce them gradually and find out what foods are specific triggers for you. That makes a lot of sense to most people and they will appreciate the explanation.
- Give Them the List: I’ll be honest, even to this day I sometimes feel shy about listing off everything I don’t eat because it overwhelms people, but if you are expecting someone to cook for you do yourself a favor and give them the list. These printable guides from Mickey Trescott and Angie Alt over at Autoimmune Paleo have been a fabulous tool for me. Every member of my family has a copy of these print-outs, I even take them with me to new restaurants and I send them to friends who ask what foods I need to avoid. Having a designed guide to send people also adds a little more legitimacy to a diet that most people have never heard of before so that is also an added bonus.
If you do these three things it will become very obvious who is in your supportive community. People will either embrace it and help you or they simply won’t. I have yet to find anyone in between. When you find your supportive community immerse yourself in it and express your appreciation, people like to know that they are being helpful. Finally, while I feel like it is most important to create an in-person community, online communities can be really effective in helping connect you with people in different stages of the process, answer some of your questions when you are just starting out, and offer an understanding that non-Autoimmune sufferers may not be able to give you. Here are some awesome AIP groups that I like and am a part of:
Autoimmune Paleo Recipe Group
AIP Support Group
AIP for You and Me
The Paleo Approach Community (Unlike the groups above, this group is for people following the Autoimmune Protocol as well as the standard paleo diet)