I believe that I first developed Crohn’s disease at age 14, although I wouldn’t officially be diagnosed until I was 36. Why it took 20 years to get diagnosed is a whole other blog post, and sadly a situation that’s not uncommon. Like our childhood trauma, we are often ignored, dismissed, and not believed when we tell a professional about our symptoms of autoimmune disease. For me the process of getting treatment for my autoimmune disease stirred up many memories of my own childhood trauma. It was impossible for me not to make a connection between the two.
My parents divorced when I was ten years old. There was plenty of neglect and abuse before the age of ten, but post divorce it only amplified. I suddenly found myself getting it from all angles: a father who was unsuccessfully managing his addictions and would shortly find himself in a multi-year prison sentence, a home life that was turning extremely violent, and a mother who was unraveling mentally. I coped by trying to make myself as invisible and silent as possible, but this only set me up to be the perfect target for constant bullying at school. I would often sit in my room at night shaking, not knowing if at any moment someone would burst into my bedroom and I’d have to fight for my life against a knife-wielding attacker. When I would bring up my concerns to my mother, I would be mocked and told to just “suck it up”.
I wasn’t even allowed to have a lock on my door. The door itself had been destroyed during an attack and so I had no where I could go to be safe. I would sit there in silent panic worrying that one of these days I would be killed or have to kill in self-defense. Looking back, I don’t think that was an exaggeration either. I could have easily been killed by accident or intentionally during one of my family member’s rage episodes. Living with intense stress for so long, of course that is going to result in some kind of health consequence.
Just four years post-divorce I was having symptoms of Crohn’s as well as intense pain episodes, similar to the one that landed me in the hospital for a week at age 36. During my yearly check-up, my doctor told me I had lactose intolerance. I was never given an actual lactose intolerance test though, he just decreed it to be so. I stopped eating any dairy but my symptoms continued. Any further complaints were met with “But you already saw the doctor!” You can only imagine what it was like to deal with untreated Crohn’s in High School with the typical teacher saying “No one uses the bathroom in my class!” I was forced to just sit there in silent misery.
It is a known fact that untreated stress causes physical symptoms. It’s a little lesser known fact that if you continue to endure the stress and ignore it, additional symptoms will manifest until your body finally forces you to stop and take care of yourself. Later that year I developed severe eczema as a result of continuing to just soldier through life. The scaly rash was all over my chest and then spread up my neck and around the side of my face. It had just grown and grown and grown until there was no hiding it.
Clearly these symptoms were like alarm bells screaming “Something’s really wrong here!”. Trauma can often be so invisible, but these symptoms were not. It was as if my body was trying to translate my anguish into a way that the rest of the tribe could understand. But help never came and I found that “the tribe” really didn’t want to deal with it.
In trying to understand my autoimmune disease, I found that there didn’t seem to be any consensus from the medical community of what actually causes it. Theories abound, including exposure to second-hand smoke, non-stick coating on cookware, early antibiotic use as an infant or toddler, and not eating enough vegetables as a kid. There is an identified gene involved in the two diseases that I have, but here’s thing: almost everyone has this gene! The gene only gets “switched on” for less than 5% of those that have it. Clearly it’s not the gene, but rather the “switching on” catalyst that is the problem.
Something interesting starts to happen though when you specifically look at the connection between autoimmune disease and childhood trauma. In a 2009 study by Dube et al titled “Cumulated childhood stress and autoimmune diseases in adults”, the researchers found that individuals that reported two or more adverse childhood events were at 100% increased risk to develop a rheumatoid disease and 70% increased risk of being hospitalized due to an autoimmune disease.
It has also been estimated that 80% of those that suffer from autoimmune disease are women. Although boys are more likely to be victims of physical abuse, girls are more likely to be victims of sexual abuse, leading to twice as many girls than boys experiencing overall childhood abuse and maltreatment. I also found a study here showing that girls’ experiences of abuse are more likely to develop into chronic health conditions as adults. Why are women more susceptible than men? No one knows for sure, but there are more women with childhood trauma and more women with autoimmune disease as a result.
As I looked at paper after paper after paper showing a clear link between autoimmune disease and childhood abuse/trauma, I thought maybe it wasn’t such a mystery of what caused autoimmune disease after all. Like everything else about childhood abuse, it seemed to be well known and accepted but just not talked about. I remembered when I was finally taken to the dermatologist for my eczema rash, the doctor turned to my mother and said “This is a condition that’s mostly caused by severe stress.” My mother just rolled her eyes in response. He turned to me, but I just sat there in silence. I’m not sure what he expected me to say. He then wrote a script for a steroidal cream and sent us on our ways. And that was that. Many future doctors would also blame my symptoms on stress, but never once offer any solutions or insight. Maybe there are no good solutions for a child trapped in a dysfunctional home?
I was particularly taken by the fact that autoimmune disease is essentially the body attacking itself. Childhood abuse is a similar feeling of attack, a betrayal by those that were supposed to protect us. It’s hard to ignore the symbolism of the disease. A woman I met who is diagnosed with Hashimoto’s disease (thyroid autoimmune) theorized that her disease was born by an over-bearing mother who refused to allow her to have a voice. So the words just sat there and festered in her throat. Another woman I know who also has Crohn’s was raised by a mother who would only feed her daughters plain salads with no dressing. Even when the school and pediatrician became concerned over how underweight she and her sister were, the mother continued. It was easy to see how this would later manifest in adulthood as a digestive disease.
For me too there was never enough food in the house growing up and I would often eat grass outside during recess. It’s not because we were too poor to buy food, my mother just didn’t want to bother going to the grocery store and she herself would eat out for almost every meal while leaving her children to fight for food or beg the neighbors. As an adult, I still haven’t broken the habit of eating very quickly and prefer to eat in private. It’s no surprise that I developed Crohn’s disease, but I also feel strongly that the act of having to suppress my feelings, of being told for all those years to “suck it up”, led to those feelings festering deep inside me. I was also later diagnosed with Ankylosing Spondylitis and I believe that too to be a manifestation of years of having to bend over backwards for my abusers.
Clearly there needs to be a solution for trauma trapped inside the body. I can at least say that I’ve found an alleviation of symptoms as I’ve worked through my own trauma. Finding balance in my life as been another journey in and of itself and I wouldn’t have thought it would have been such a struggle. We receive so much programming as children that we aren’t good enough and that to “prove them wrong” we have to “suck it up” and keep working ourselves to death. But the thing is, you’ll never be “good enough” until you realize that you were good enough all along. You weren’t the bad one.
Your disease is trying to send you a message: You deserved better. You deserve healing. You deserve a break.