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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.
Joan Claire’s journey with autoimmune disease includes many diagnoses and changes in direction, but ends with a fundamental shift in the way she thinks about illness. Mindset and emotional work have been central to her recovery, especially at points when she was at a “plateau” with her symptom management. Her story is a beautiful illustration of the fact that protocols like the AIP are simply frameworks, and that following our intuition and personal values plays a big role in long-term wellness.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
During late pregnancy and shortly after the birth of my second child in 2011, I began to develop sharp pains in my sacroiliac (SI) joint, as well as generalized pain in my spine. One of the worst effects other than having difficulty with walking around, carrying my young children or being active running or hiking as I loved to do was that the pain would systematically wake me up around 3 or 4 AM, making it nearly impossible for me to fall back asleep.
At first I tried multiple physical therapy sessions and exercises to no avail. Around 2013 I saw a rheumatologist who diagnosed me with undifferentiated spondyloarthropathy since my symptoms exactly matched those of ankylosing spondylitis (AS) but I didn’t have the HLA-B27 gene for AS. Around this time I was also diagnosed with hypothyroidism and bouts of autoimmune uveitis. In later years, my naturopath diagnosed me with pyroluria, for which I now regularly take supplemental zinc.
Thankfully, I no longer think of myself in terms of my diagnoses (they are not ME!), but I always ask myself, “What can I learn about myself and what do I need to do differently to alleviate or eliminate these symptoms?”
I’m so grateful to no longer have flares unless I veer too far off an AIP/paleo diet, get way too little sleep, or overtax my body in some other way. However, when I first got pregnant with my third child in 2016, I had a massive physical flare (thankfully short-lived!), so I know huge shifts in hormones also play a big part in the onset of flares for me.
Describe what the lowest point on your health journey was like.
I don’t think of a single lowest point, as I would get physically disabling flares frequently or periodically for many years after my symptoms began, especially if I didn’t stick to an AIP diet or had too much of a food I was sensitive to. Being unable to walk up the stairs to my bedroom at night without putting most of my weight over my husband’s upper body as he almost entirely supported me and I dragged my feet along, or needing his help to change my clothes, was hugely humbling.
Being almost unable to lift my toddlers/preschoolers into their car seats made daily life as an at-home mother challenging at times. During a bad flare, due to my greatly lessened mobility, I questioned whether I could rescue them if they ran toward the street, and I felt like I couldn’t even take care of my kids’ most basic daily needs. I cried a lot by myself, to my husband, with friends, and while praying to God, as my faith has been my foundational bedrock through all the ups and downs of autoimmunity.
A huge part of the problem, as I am so grateful to now realize, was that my mindset was generally not conducive to healing. I tended to focus on what was or seemed to be going wrong in my life, rather than what was going right. I did not have a regular habit of gratitude as I also struggled with helping my now almost 9-year-old son with his behavioral challenges related to his food sensitivities and diagnosed oppositional defiant disorder/intermittent explosive disorder.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
The rheumatologist who diagnosed me with my autoimmune spinal arthritis told me my options were to try biologics like Remicade/Humira and/or regularly take NSAIDS. From my past bad experiences with drugs (long-term antibiotic use, birth control pills for hormone regulation, anti-depressants, and prednisone when I got lupus-like symptoms in high school from the long-term antibiotic use!) and the biologics’ own warnings that they “may cause cancer,” I immediately decided I was not going to manage my disease symptoms with drugs. I looked for another way, and shortly thereafter found the AIP diet which Dr. Sarah Ballantyne (the Paleo Mom) was beginning to blog about online. It captivated my interest immediately and I dove right in.
In recent years, after feeling like I reached a plateau on the AIP/paleo diet and needed to dig deeper to help my son with his food sensitivity/behavioral issues, we did the GAPS intro diet stage one low-histamine meat stocks and homemade veggie juicing (both of which are also AIP elimination phase compliant) for several weeks. These gut-healing, low-histamine, and detox-promoting foods continue to help me reap the benefits of superfoods like bone broth without the high histamine content that can cause a massive flare for me. This greatly aided my ability to fully reintroduce eggs and become less sensitive to even nuts/seeds/coconut.
Finally, in the past few years I have turned to mindset work — regular reading of personal development, faith-building, and mindset books that discuss the hows and whys of cultivating a positive, healthy emotional state not only for health reasons but to push through obstacles. I have struggled for many years with focusing on the negative, fear, or worry and feeling like I have little control over my emotional state. With regular mindset work, I am reaping the benefits of keeping my stress levels down, not feeling like a victim to life and its challenging situations, developing a practice of gratitude and joy, and working toward my vision for my life.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
The AIP diet as described by Dr. Ballantyne (The Paleo Mom) helped me start to feel better right away. I intuitively felt this diet was good for me because it involved so many nutrient-rich whole foods and brain-healthy fats, and she did a great job of explaining the science behind it, which validated that this would help my body heal and reduce inflammation. I had previously tried a vegan diet which was heavy on soaked grains including oatmeal, which left me feeling extremely moody and didn’t help lessen my inflammation.
The AIP diet helped me feel less inflamed not only in my joints and spine but also in my brain — I felt clear-headed with a brighter outlook and more energy as long as I stuck to the diet and avoided problematic foods for me.
The mindset work is helping me see the good and blessings in everything, to gain control of my emotional state, and reduce my stress. I used to complain or blame others a lot more for my frustrations; now I take full responsibility for my emotional state, and it’s much more empowering to realize life happens for me, not to me.
What resources have you used on your healing journey so far and how did you find them?
I relied a great deal on the Paleo Mom’s website and her book The Paleo Approach in my early years after my diagnosis. I also sought guidance for supplements and lab testing from several naturopaths until I found one that I trusted, as well as a nutritional therapy practitioner (NTP), who also helped me with supplements, learning to eat in a parasympathetic rest and digest state and chew my food slowly, use digestive supports like raw apple cider vinegar before meals, drinking adequate water, prioritizing exercise and prayer/meditation, etc.
For me, my autoimmunity is a spiritual journey, too, and for that I have turned to the foundational bedrock of my Catholic Christian faith. So many times I have felt somewhat or totally hopeless along this journey of autoimmunity and other life challenges, and I have relied on seeking guidance through prayer, solid faith-building books, friends, spiritual directors, from my husband, and from a prayer group of older, wiser, more faith-filled women who prayed over me and for me. I don’t know how I would have made it this far without my faith and the encouragement and prayers of many supporting me.
Finally, in the past 2-3 years, I have also begun regular mindset work to continue making progress on my healing journey. The more I learn how our conscious and subconscious thought patterns affect our biology and bodily health, the more fascinated and passionate I become about this topic. I am continually learning and trying to create habits that create a strong, resilient mindset that helps me feel my best and consistently work toward my goals. It is super exciting to see the progress I’ve been making (less stress and more feelings of joy and gratitude) and to learn that this is real, cutting-edge science, not just in my head! You will likely not learn it from your standard MD or rheumatologist so sometimes you’ve got to think outside the box and find your own path to healing, following your intuition and your own values.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
The rheumatologist who diagnosed me recommended biologics such as Remicade or Humira, as well as chronic use of NSAIDs. I read the biologics’ own pharmaceutical warnings that they could cause cancer and decided then and there that I was not going to take that route to improving my health. I also knew that NSAIDs over time can damage the stomach lining, so I decided to look for holistic options to heal myself.
I feel that it is super important as autoimmune patients that we don’t just give ourselves over to a diagnosis or prognosis as victims. We are only victims if we allow ourselves to be. True healing and growth comes from healing within our hearts and minds — breaking through our limiting beliefs about ourselves; cultivating daily gratitude and joy; choosing love, forgiveness, and compassion over resentment, anger, frustration, and discouragement; living in the present especially through deep breathing or meditation; setting loving boundaries with ourselves and others; and taking systematic, courageous actions to pursue the life we envision for ourselves.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
I have always loved to be outdoors and enjoy God’s beautiful creation in a variety of landscapes, especially while exercising. Nothing makes me feel more alive than going for a run during a gorgeous sunrise, going hiking with my family, or practicing my surfing in the warm Pacific ocean of Hawaii with green mountains above the shoreline. I love to challenge myself, be adventurous and spontaneous when possible, and live life a little bit on the edge sometimes.
Cultivating friendships — being raw and honest, sharing the highs and lows, having a good laugh with not only my own family members but women I admire and trust — is also a real source of joy for me.
At the very core, my joy and peace is my faith, in knowing I am a beloved daughter of God, created in His image and here to grow in virtue and serve others. I feel most fulfilled when I notice I am growing as a person — when I practice courage and take action on something that makes me a little uncomfortable but will serve others or help me reach a goal, when I choose to stay calm and genuinely listen when I’m tempted to lose patience with my kids, and when I try to become a more generous and compassionate person by listening and supporting someone who needs help or could use the perspective I’ve gained through my own life challenges.
It’s hugely gratifying for me to help other women learn to take control of their own healing journeys and find the inner power they wield over their lives through empowering thoughts.
To learn more about Joan Claire’s healing journey check out her website, or join her AIP Facebook group.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.
Why is it that only ever women are in this series? Do man not get sick, too?
Bea, we have quite a few men in the success story archives. Feel free to look back. That said, women are mainly represented in the autoimmune community because we make up 75% of those developing autoimmune diseases, as compared to only 25% of men.
Hi Bea! We have featured many men in this series, in fact the very first story we featured was a man. I’d encourage you to visit the archives to check them out.
A year ago my boss’ son was diagnosed with autoimmune encephalitis. It’s relatively new as far as being diagnosed as not much is known on it. Have you heard of the Autoimmune Wellness and this immune disorder. Anyone ever write in on this disorder?
Frannie, we do know about autoimmune encephalitis, but I’m not sure we have any specific success stories here on the site. Sometimes joining online AIP groups can lead you to others sharing their success stories though.
Hi Frannie! The autoimmune encephalitis I’m most familiar with is Hashimoto’s encephalitis, which is related to Hashimoto’s thyroiditis, and I have a friend with it who has been very helped w/ AIP. There are tons of “rare” autoimmune conditions out there and we encourage everyone to make sure their provider is looped in before starting any dietary or lifestyle changes. Hope they start feeling better soon!
You’ll NEVER get a diagnosis on Medicare SSDI- they are just waiting for me to die because I won’t take their addictive pills anymore and believe their lies. Soon as they realized I knew what was wrong their language and tone was completely different. On paper they have done nothing wrong- I have done everything wrong (being truthful.) They have now stopped my disability payments and I have nothing. Surprised I can still drive. No husband or kids- I was an easy target for them to make money $$$$$ #BigPharmaPuppets