Suffering may be the path to enlightenment, but most of us will avoid it if we can.
What healing looks like.
We all want to be healed, and so we look for confirmation that healing is possible, holding on to the narratives of miracle-cures and magical-remissions like talismans for our future well-being.
But the reality is that healing autoimmune is slow, non-linear and perhaps always incomplete.
Once a body is in autoimmune response, it is always in autoimmune response.
And if we don’t get that at first, it can lead to disillusionment and an unwarranted sense of failure.
In truth, most of the autoimmune bloggers that I know experience flares, even after strict commitment to the AIP for years. Many of them write about their setbacks on their blogs or social media. Some don’t.
Tara Perillo from Paleo Cajun Lady says “I always share my ups and downs in blog posts and social media. I feel like people are coming to us for the truth, not some perfect AIP fantasy land. I do try to end each negative post with a positive message, however. People appreciate that even we struggle.”
Susan Vennerholm from Backcountry Paleo agrees: “I feel that sharing the ups and downs of living with AI is important. We’re not superheros, and I think when readers realize we all have challenges, it makes the journey feel that much more doable. The important message is that even with these setbacks, we keep at it.”
Other bloggers choose not to share information about their health challenges, for various reasons, including that it can create vulnerability during a time when they don’t have the strength to deal with critical comments (or lack of response) from readers.
As Rory Linehan from the Paleo PI explains, “I try to focus on the positive but mostly, when I’m going through a setback I don’t want to share it until I’m out the other end and I can gain some sort of insight on it. Then by the time I’m out the other end, things are rosy again. I’m conscious that I’d like to share more of the challenging aspects of dealing with chronic illness, it’s just I want to frame it in a positive and not a negative light – which is challenging.”
Emma King from The Bacon Mum elaborates “It’s really important to share, but when I was at my worst this year and in a flare I just couldn’t cope emotionally with any negative responses to my posts.”
Dora Siah from Provincial Paleo explains, “Sometimes people just want to read the positive aspects to affirm that they’re doing the right thing. Especially the ones that feel defeated easily. Other times you get people wanting to hear about the difficulties others face, so as not to feel so lonely in their healing journey.”
Eileen Laird from Phoenix Helix points out “Many bloggers do share their setbacks, but that doesn’t mean people find those posts. We tend to find what we are looking for, which is why when I wanted a cure, those are the stories I found.”
In this post I’m sharing a web-log of posts that get into some of the challenges faced by people who are healing through diet and lifestyle.
So we can look reality in the eye, while still maintaining our faith in healing (that’s the Stockdale Paradox~).
With tremendous respect (& gratitude) for the honesty, here they are:
- The Difference between Reversing Autoimmune Disease and a Cure by Eileen at Phoenix Helix. “As my two-year healing diet anniversary approached, something surprising happened. Instead of feeling grateful, I would find myself crying for no reason, carrying a sadness I didn’t understand. It took me a while to realize it was a deep grief over not being cured.”
- On Finding What Works by Emily at Field Notes on Healing. “I had to face the fact that a year using the autoimmune protocol (AIP) diet, lifestyle changes, and functional medicine (along with the medication my doctor had prescribed me) were not enough to fully correct my rheumatoid arthritis symptoms.”
- Endometriosis Surgery by Angie at Autoimmue Paleo. “I would be a liar if I said there is no part of me that isn’t having a little bit of a pity-party. I have worked tirelessly for two & half years following Autoimmune Protocol & adopting Paleo lifestyle changes. Those things dramatically improved my health & I had hoped they were enough to manage Endo. They are not.”
- Bending Not Breaking: My consent to surgery by Martine at Eat Heal Thrive. “I had to confront the reality in my very-much-ongoing healing journey that no amount of medication, clean eating, and stress management could address this current complication.”
- My Personal Battles with Stress by Sarah at The Paleo Mom. “The truth is that the last year and a half have been super tough for me healthwise. I have really struggled with both my physical and emotional health as the result of high stress. Primarily, my complaints have been gaining weight, fatigue, joint pain and some tendonitis, mild depression, and active lichen planus lesions.”
- An interview with Terry Wahls by Eileen at Phoenix Helix. “It takes a long time for your body to repair damage that took 35 years to develop. It might take 10 years to heal that… My stamina is incrementally improving, but I’m certainly not yet at the equivalent stamina of another 57 year old in good health.”
- Am I an AIP Failure because I Haven’t Reached Full Remission? by Tara at Paleo Cajun Lady. “I have completely healed a stomach ulcer, various psoriasis rashes, inflammation in my intestines and colon, butterfly rash, fibroid tumors, bleeding gums, leaky gut, and the list goes on. But, I still have improvements to make. I still have symptoms to deal with.”
- Accepting Illness by Christina at A Clean Plate. “When I say I feel amazing, I’m talking about being able to get out of bed, keep up with my household chores, hang out with my boyfriend, and eventually make it back to bed without anything bad happening. More often than not.”
- I’ll Never be a Paleo Success Story (and why I’m okay with that) by Jaime at Gutsy by Nature. “The ever present danger for those of us who are using food as part of our healing strategy is that we end up letting an awareness of what we do and don’t eat become an obsession. Where is the line between eating a healthy diet and disordered eating?”
- What Does an AI Flare Look Like for Me by Alaena at Grazed and Enthused. “Why am I sharing these personal details of an autoimmune flare with the Internet? Because autoimmune disease can be a lonely place…”
- Getting back to my Blogging Roots: An Update on my Life by Katy Haldiman. “During my journey, I have had some setbacks and struggles, which I believe is a common experience among people with autoimmune disease. A return of migraine headaches was one such struggle for me. A frequently drooping eyelid from myasthenia gravis was another.”
- To Medicate or Not to Medicate… that is NOT the question by Slightly Lost Girl. “One of the things I often hear in the AIP community is, ‘I am sick, but my diet isn’t working, so I am going to give up and just take my medication instead.’ For me, there is a fundamental flaw in this statement. It is like saying ‘I got hurt in a car accident, so seatbelts obviously don’t work. I am going to just put a cast on my broken leg instead of wearing a seatbelt.'”
- Biohacking Update: 17 months on the Autoimmune Protocol. This one’s mine: about the progress of my husband Matthew on the AIP. “After 16 months on the Autoimmune Protocol (AIP), we were back where we’d been at the worst of Matthew’s autoimmune crisis: he was almost completely incapacitated & unable to care for himself. Despite that, the AIP is working.”
- Christie’s Story on Phoenix Helix. “I’ve felt close to remission many times in the past year. I have very little psoriasis left on my scalp or torso. Why I get so close and then have a step backwards, I have no idea. I wish I knew. I wish I understood everything my body is trying to tell me.”
- In this Healing Stories podcast, Eileen interviews people who have had a variety of healing experiences on the AIP, including Melissa who, at one time, was bedridden for 18 months. As Eileen summarizes, at the time of this podcast, Melissa was “independent in self-care and no longer disabled. She needs to rest after periods of activity, but she has quality of life again. And she’s reduced her medication substantially. At her worst, she took 36 pills a day. Now she’s down to 8.”
- Insecurity: What Happens Behind the Scenes by Angie on Autoimmue Paleo. “Even though I… am actively working here to form deep human connections, specifically around the struggle of illness and the journey to health, it is still sometimes really tough for me to be truly open and vulnerable.”
My deep appreciation to Eileen from Phoenix Helix for inspiring me to put together this post and for finding links for me~.
Eileen is reversing Rheumatoid Arthritis on the AIP. Recently she wrote on facebook:
I am not cured. I’ve never met anyone with autoimmune disease who was cured. Nor am I 100% symptom-free. Complete remission is rare with autoimmunity. I have improved my symptoms by 95% through the autoimmune paleo diet and lifestyle, and where I started (excruciating pain and disability) to where I am today (a full and beautiful life) is night and day. But it’s not perfection. In addition to diet and supplements, I take 1 Aleve tablet twice daily to manage my remaining inflammation. For someone with a severe form of RA, that’s amazing, and I’m grateful. It’s the only medication I take. I’ve been honest about this on my blog, but sometimes people miss these details. I’m sharing this today, because I want you to know that if you haven’t achieved perfect healing you aren’t alone. Some people need more medication than I do. Some people need less. Some people regain all of their abilities. Some people regain some. I interview a lot of people for my blog and podcast, and I believe every step forward is cause for celebration: any ability you reclaim, and pain you relieve, any energy you regain. That’s reversing autoimmune disease. It’s not about perfection. It’s about living your best possible life.