That’s a long title up there and living with autoimmune disease feels like a long road. I am writing this blog in the spirit of sharing my personal journey to inspire you if you are also on the path of living with autoimmune disease.
I have lived with an AD since I was eleven but I did not know it was an AD until three years ago when a doctor causally said, “Oh you have Hidradenitis Suppurativa,” while giving me an exam. Before that, I only knew that I had some skin curse with no cure. I lived with it by ignoring it even though I was always dealing with it. Denial is strong.
My particular disease is ugly, insidious, painful, and a fucking cross to bear. I have immense compassion for anyone bearing the cross of AD because whichever one you have tends to be incurable and wreaks havoc on the body and psyche.
My disease caused me to feel shame my entire life. I have worked through shame by feeling it with love and letting it go. I am free of it now and it wasn’t easy to release but I did it.
In my mind, I tell myself that we all bear our crosses, all bodies are imperfect, ugliness is an aspect of life, and that being a brave advocate who knows my beauty is what can bring myself and others inspiration. I rewrote the shame story into a story of empowerment and acceptance.
I could not release shame and rewrite the story of living with AD until I got mostly in remission. Remission of my symptoms led the way for the healing of my psyche.
I say mostly in remission because I still go in and out of remission but overall I would say I am in 90% remission and it is completely connected to food and going on the AIP and ketogenic diets as a lifestyle for the long term.
I am no longer a “normie”, a term addicts use to classify those who can use alcohol or drugs in moderation without being addicted. I feel there is a big of a distinction when living with AD.
The first year I knew I had HS, I ignored it. Denial is powerful. I was in grad school and my mom was battling the cancer that would kill her a year and half later. I had no room in my psyche to face my disease. But then I did have room. I was ready in the summer of 2018.
I looked up HS online and found blogs, forums and a lot of people finding remission by going on the autoimmune paleo diet or AIP for short. I started this diet the very next day. I was desperate because my flares were so bad I was willing to try anything.
The AIP diet eliminates all sugar, grains/rice, nightshades, caffeine, seeds, nuts, alcohol, and dairy. Basically everything but organic meat (grass fed and free range), fruit, and vegetables. I switched my diet in one day, eating only chicken breast, apples, carrots, greens, and a fruit smoothie to start me off the first week.
Being a genuine food addict my entire life, I battled not having “my foods” on very deep levels, much deeper than somebody who is not addicted to food. Every day for a year I felt despair, anger, and every uncomfortable emotion yummy food had been stuffing down. I also felt isolated from my friends because I could no longer eat out or have a few drinks and I was used to doing that most days of the week.
What gave me strength to stick with it was that I went into immediate remission within weeks of staring the diet. It was a sheer miracle!
The remission did not last and new flares appeared but far less flares cropped up and they were far less severe. Remission from the severity began and has stayed with me since I began the diet and so began my journey of figuring out all of my trigger foods.
I went to a naturopath to get some help and started the journey of learning I have a huge yeast allergy and needed Vitamin D, along with other aspects I won’t get into that have helped me to deepen remission with healing the gut.
To make a very long year and a half journey short, I learned that yeast, nuts, seeds, grains, dairy, sugar, beans, fruit and many vegetables are trigger foods. I learned that I need to not only do AIP but I need to go ketogenic because insulin is a trigger. I need to cut out all fruit completely and keto adapt so my body uses fat instead of glucose as fuel. This has greatly improved remission.
I reintroduced alcohol the night my mother died in the beginning of 2019. I learned I can drink hard spirits with nothing added but I cannot touch beer or wine. I learned I can eat eggs (so far). I can also have coffee in moderation.
I tried nuts and bacon but after a few months they became triggers. This happened with avocado and broccoli. Some foods cause immediate flares while other foods build up and then cause flares. The journey is constant and never ending.
I learned that lectins, phytates, and oxalates are poison to my body and this is why vegan foods harm me which is another aspect I have had to grieve. I have the heart of a vegan. I spent many years of my life eating vegan and vegetarian unknowing of how sick it was making me. Now I am a carnivore. I had to let go of my treasured belief system so my body could be healthy.
I have grieved and continue to grieve the loss of food as addiction, celebration, and comfort. Emotional eating is over. Eating out with friends is over. Eating to “treat myself” is over. Normies say that all the time, “treat yourself”. But if I treat myself with food I get a huge flare and it’s just not worth it. The treat is poison.
Those of us with AD who go AIP, keto or both to heal cannot treat ourselves with food because it makes us feel like complete shit. I tell myself that food is fuel and nothing else. This is my new story.
Don’t count me in when you make celebratory food plans. I have no desire to celebrate Thanksgiving because I can’t eat the food and from now on, I am done thinking I need to partake of any holiday with food. When I travel food will not be part of the adventure. When a partner comes into my life he will have to live with food being only fuel for me too.
I like the foods I can eat. I like eggs in the morning, salmon, Brussel sprouts, cauliflower, chicken breast, coconut milk, burgers, steak, and arugula. I am satisfied when I eat even though not a day goes by I don’t crave cheese, bread, hot pepper, beer, tacos….I mean, the grief is real and the loss is daily. I compare myself to an addict in sobriety taking it one day at a time.
What feels amazing is being mostly in remission all of the time. My body is healing on deep levels too, beyond just remission of symptoms. I am healing my organs, gut, skin, bones, losing weight, and all anxiety is completely gone. Within a month of the AIP diet all anxiety left my psyche as anxiety truly does live in the body. Within a month of being keto and AIP my ability to focus greatly increased and my energy levels began to even out. The healing continues.
I love that I eat like my ancestors. I feel that how I eat connects me to them. I feel more rooted to the earth. My sleep is pristine and I no longer suffer from insomnia. I have become strong and disciplined in every aspect of my life. I exercise five to six days a week. I do what I say I will do in terms of my daily and long term goals. I can handle anything, is what it feels like.
I have no anxiety, no procrastination, no split in the psyche where what I want and how I behave are out of alignment. I have come into a much more profound sense of self love, ease, and integrity. My psyche has never been healthier and more at peace.
Funny, how each day I feel loss and cravings but each day I feel at peace with myself.
I no longer respond to loss and cravings with fear or resistance. I have learned the power of surrender. I accept loss, pain, and my AD. Grief is not something I need to avoid anymore. I am no longer in denial of the dark side of life. I am at peace with my limitations, the ugly, and all that is hard.
For now, I have whisky, mezcal, and coffee with coconut milk as pleasures I can still indulge in. I cannot overdo it so I drink in moderation and I am also willing to let these drinks go the moment my health needs it.
I have become so emotionally strong that I no longer depend on any food, drink, or substance to keep me feeling ok or to enjoy life. I cannot stress what a big deal this is as I have been a food addict and hedonist my entire life, always using food as comfort and enjoying the party. Now, I can find comfort and enjoy the party in a new way.
I am in the process of learning how be a hedonist in new ways that are good for my health. Sexual expression is something most people never explore fully and is one of our greatest gifts as human beings. No shame. What possibilities exist to explore and merge with another soul on a sexual level and experience deeper levels of pleasure, replenishment, and love?
How can my body express through any form of movement that brings heightened pleasure? Dance, hiking, sky diving, fire walking, floating, strolling….
There are many possibilities.
I find hedonistic pleasure in essential oils, incense, crystals, flowers, the beauty of nature, fashion, putting on make-up and dressing up. I find hedonistic pleasure in gazing at art, listening to music, and reading books. There is so much to imbibe and indulge in that is not food and drink. I also feel immense satisfaction when I paint, write, sing, and express myself creatively.
AD has transformed me for the better.
I know in my heart of hearts that AD is connected to multigenerational trauma. Interesting that my mother and father both had the same AD as me.
My mother had it killed with near lethal amounts of antibiotics from a certain doctor in Vegas who had his theory. I believe this treatment destroyed her gut and led to many health issues to follow. She eventually got colon cancer. I do not follow in her footsteps with my AD and for very few has antibiotic treatment worked. My father said he stopped having flares in his fifties and that it just went away. I can only hope for such a healing to happen to me. I cannot count on it.
For now, I must eat keto/AIP to stay in remission but I am thankful for this diet beyond being in remission because I am healing my body completely, healing multigenerational trauma, healing completely from anxiety, and healing food addiction all while transforming into a stronger, more centered, disciplined, equanimous, and poised individual who is no longer dependent on “the cookie”.
It has taken a year and half to get to this place of love, strength, balance and health that is not static or fixed. Like I said, I still get flares and have to figure out why. I still feel loss for food and cravings rise up all the time (though going keto took away 80% of all food cravings). There’s always work to be done and progress to be made in body and mind. Just like in a yoga pose, you need a constant focus to stay balanced.
If you are reading this and have AD, I hope to provide you with some inspiration from sharing my story. Food truly is the biggest culprit of many if not most of AD symptoms.
AD seems to be rooted in generational trauma passed down through the DNA and from diet. The AIP diet works and for some of you, keto will also work.
Western medicine still looks down upon all holistic routes but go ahead and let them. If you dedicate yourself to trying the diet for 30-90 days you will experience the results for yourself. You can reintroduce certain foods after the initial period and begin cultivating the exact diet that works for you.
Will power gets easier over time as you adapt and your body feels better as it adjusts too. Anxiety will diminish and you will become more disciplined and emotionally independent.
Grief is real for no longer being a normie and getting to eat what you want but there is liberation in no longer fearing grief. Life is suffering, Buddha said. If we face the suffering with an open heart, willingness, and a mindful approach that does not resist limitation, pain and loss then suffering will transform your soul from a mud ball into a pearl and your body will be a sanctuary living with illness.