Autoimmune and Trauma - My Vitiligo Journey

[TLDR: In this blog I explore the emotional and psychological roots of my vitiligo. If you'd like to reverse your vitiligo or other autoimmune disease, do check out my 4 week course.]

When I was 11 years old, my shins turned white.

At the time nobody knew what was going on. Our paediatrician hadn’t seen anything like it and referred us to a dermatologist. The dermatologist took one look and said “this is a textbook case of vitiligo”. I had no idea what that meant.

Looking back on that moment, what should my reaction have been? Fear, maybe? Curiosity? Some part of my body is, like, eating another part of my body? That’s crazy!

But these were not my reactions. In those days my emotional range was somewhat limited. There was only one possible emotional response for me.

A few years earlier, there had been a fire in our home. In retrospect if it had to happen, 1985 wasn’t the worst time for it. We had already sold the house and were planning to move to a different suburb of Washington DC. But the way the whole thing ended up happening was pretty traumatic, especially for my mother. The fire hadn't harmed the house much but most of our stuff had some degree of smoke damage. We were told to leave the things for the professional cleaners to do their job, but in the end most of our things were either destroyed by the cleaning process or stolen by the cleaners. 

For me as a kid who had lost my comic book collection and my BMX, I was annoyed, but I wasn’t really traumatised. What did traumatise me was that I was losing my mother. This was not the first time she had lost (nearly) all of her earthly possessions. Something very similar had happened when my family was fleeing the violence of the Pakistan-Bangladesh war a few years before I was born. These events reminded her of those earlier ones and my mother became depressed and emotionally distant.

At the same time as all of this was going down, our lives were changing and I was at least partially to blame. I was the reason we were moving from one suburb to another. I had been accepted at an elite prep school in Washington, DC. We were moving house in order to be closer to my new school.

There are lots of ways to describe the experience of moving from Fairfax County public schools to St. Albans School for Boys, but one way to understand it is that I was used to being a big fish in a small pond. In public schools I was not only the smartest person in third grade. I had also been taking classes with 4th and 5th graders and I was among the smartest kids even among the older cohorts. In St. Albans I was perhaps still a big fish, academically speaking, but now the pond was full of sharks. Ultimately I would come to value some things about St. Albans, but for the first few years I was getting punched in the teeth every day (metaphorically and sometimes literally).

This would have been about the time my testosterone levels were beginning to climb as I entered adolescence. So perhaps it’s not surprising that my reaction to all of this was to become one huge pre-teen rage ball.

The anger was so all-consuming that there was no room for other emotions. So when that young dermatologist was grinning at my legs trying to disguise her pleasure at seeing something in real life that she had previously only seen in textbooks, I was pissed off. At her, at the disease, at the topical creams and fancy lights I’d end up standing in front of, at life in general. I only had one emotion - anger - but there was a spectrum of rage and the doctors got the muted emotional response. The real rage was mostly directed at myself.

One of the things that I was good at and enjoyed as a kid was swimming. At St. Albans I was no longer the best swimmer but I was still good enough to be on the swim team. But now that meant exposing my legs which were increasingly devoid of pigment and dealing with the funny looks and sometimes uncomfortable questions that the legs would solicit. The creams and lights didn’t seem to be doing anything for my pigmentation; if anything my vitiligo was getting worse as a result of these treatments. So I would now be swimming the same way I did everything - angrily. Anger didn’t take me to the podium as often as before all this. When I picked up the guitar, anger didn't make me a good player. In retrospect I doubt that the anger improved my performance in anything - academically, musically, in friendships, or in romance. It wasn't serving me, but it was my only defence mechanism.

Those who have watched some of the videos I’ve made about my vitiligo experience would know that I’ve done a lot of research into the physical processes that lead to autoimmune disease (vitiligo being one of them). I’ve talked about gluten, tight junctions in the digestive tract and molecular mimicry. All of those things are important, no doubt. But in my particular case (and in a lot of cases from what I’ve seen) autoimmune is a manifestation of emotional and psychological illness.

Different knowledge systems have different ways of explaining this - shamans talk of being out of alignment with our nature, sufis will talk of being led astray by a jinn, Ayurveda talks of the body running too hot or too cold because of the energy associated with past trauma.

In the Eurocentric discourse we are all part of, the word that’s sometimes used is "psychosomatic", but I don’t think that really gets at the real cause. The problem is not “in my head”. I encountered a situation for which I had no remedy. I couldn’t cope and that inability to cope manifested itself as an autoimmune disease. Yes, the fact that I had a lousy diet no doubt made a difference and my genes played a role in determining which specific autoimmune disease I would manifest upon myself. But at its most fundamental level, what I had (and what I still have to some extent) is an emotional imbalance based on my inability to accept a difficult reality.

The emotional work of healing is hard. I’m describing events that happened more than 30 years ago and they still have an impact on my life. If someone felt like being unkind and simultaneously insightful they might describe these as the defining events of my life. I won’t pretend that I’ve worked through it all as yet.

But what I can say is that now that I’ve done the physical side of things and more or less put my vitiligo completely into remission, it’s a conversation I’m more open to having. When we are living in a way that reduces stress, reduces inflammation and maximises our bodies’ access to nutrient dense animal foods, we are more able to revisit this terrain as what we should be: the person who tells that little child (who’s still inside me, as I believe you might have a little child inside you) that things are ok, that it’s not his fault, and that there’s nothing to be afraid of anymore. And when we heal that little child, there is the chance that we can heal ourselves in a way that goes beyond what we’ve been able to do physically through diet and lifestyle changes.

When I first came across this line of thinking, in the work of Gabor Maté and others, I thought it was rubbish. The body and the mind are different, and whatever's going on with my skin has little to do with events that happened long ago. But as I've become a better researcher, I've come to understand that that's a very limited view and one that really only exists in the West. Most other cultures and increasingly Western science itself cannot draw sharp distinctions between what happens in the head and what happens in the rest of the body. And we know from studying things like the placebo effect that our minds can literally determine the body's response both in positive and negative ways. 

Just because we know that there are emotional roots to disease does not mean you have to start there. For most people I would say starting there is more difficult than starting with the kind of protocols I go through in my 4-week Reversing Vitiligo course. But sooner or later, everyone needs to do this work. Ultimately trauma doesn't just lead to bad things like addiction and autoimmune disease. It prevents us from showing up in the world as the best version of ourselves. And that's a shame.