I was probably 7 or 8 when I remember watching the show “Why, Charlie Brown, Why?”. The episode depicts a little girl who gets leukemia. I remember her symptoms of fatigue, frequent illness and easily bruising being similar to my symptoms. Severe Anemia, it turns out, has similar symptoms but I would be an adult before I learned this. Can you imagine being 7 or 8 and thinking you had cancer? Knowing your body is not well?… Yet I never saw a doctor.
Being sick and having to deal with doctors and testing is already hard enough. But what is difficult for one person takes on a whole new challenge for someone who has experienced prolonged childhood trauma. These individuals likely lived years under abusive situations where they were repeatedly hurt or neglected. The toll this takes is already unimaginable to most. Unfortunately, the struggle doesn’t stop there but continues to impact even the most normal of situations.
When my testing started in late 2017 I never thought I would be spending the next year and more in and out of doctors’ offices, answering questions and being poked and prodded at. In this time I have met with five different specialties including Neurology, Hematology, Gastroenterology, Cardiology and even an ENT for good measure. Now, to anyone, this sort of relentless testing would be tiring but for someone like me with a trauma background, it has become a whole new sort of monster.
The first struggle I often face when meeting a new doctor is sorting out family history. This is the part of the intake that you have to remember if any family members have blood pressure issues or were diagnosed with cancer. Most answer questions easily while a few may struggle with remembering but for the most part, this is a fairly painless part of the process.
Now imagine if you will sitting in this office with a full laundry list of medical complications in your family. Telling your doctor that from your knowledge there are several cases of heart issues, blood pressure issues, cancer scares, even heartburn and liver issues are reported. The problem is that even will all of this information you are no closer to knowing if any of it is relevant or even true. In my case drugs and alcohol were heavy influences to both my parents and many of my more extended family. Was the high blood pressure and heartburn a side effect of alcohol abuse? Were the heart palpitations a result of drug use? I may never know.
This gets even more tricky when one must start to speculate whether the so-called diagnosis was even real or pleas for attention and sympathy. Many of us have a hard time wrapping our head around how someone could lie about something like that but in the would of addiction and abuse it is all too common. Maybe it is used as a way of keeping a loved one close, maybe its to exploit money or services. But whatever the reason it can make the simple task of family history difficult. And all of this before even considering the truth of paternity.
Another particularly fun part of a doctor’s intake is the section of time when you have to actually tell the doctor what is happening with you. In my situation, the medical appointments and testing are due to dizzy spells related to sudden drops in blood pressure as well as treatment-resistant anemia (unrelated). One thing they like to establish is the length of time symptoms have occurred and other potentially related symptoms or conditions that were present earlier in life.
This is the point of our consultation that always causes me anxiety mainly because I have no idea how to answer these questions. From my understanding, I always had issues with anemia, but was I ever properly treated? No. I also frequently suffered from dizzy spells that I usually related to anemia. But was I ever actually sure? No. Add this to untreated asthma and frequent injury and you get a fairly inconclusive childhood history.
There is no surprise that the question that follows this is why I never saw a doctor as a kid. It is at this point I go to my standard answer “I was raised in an abusive home.” From there you could pick one of two reasons why medical attention was not given to me. First doctors were expensive and quite frankly my health was not important. Second doctors were dangerous because they had a tendency to notice patterns of injuries or illnesses. The conclusion to either reasoning meant the denial of medical treatment no matter how important it may seem.
In the last year, I have repeated these steps nearly a dozen times as I move from specialty to specialty and testing team to testing team. More often then not the response from these doctors is an awkward silence as they stumble over how to respond. In this moment I have to remind myself that just because this is my normal doesn’t mean it is a normal situation for them. I wait for the uncomfortable “I’m sorry you went through that” so that we can move on with the appointment.
As much as I wish more medical professionals were knowledgeable about trauma this is just not the case. Instead, it becomes my job in the appointment to educate them about what prolonged childhood trauma is and how it has impacted my medical care in the long run. I have to remind them of the tests and procedures that could be triggering and being subjected to questions that bring up very real emotional pain. Though it all I am watched with pity as the awkwardness of the situation becomes almost palatable.
This is the repercussion of prolonged childhood trauma and for us, this is simply the reality we live in. We are people who were never taught how to take care of ourselves seeking help from those ill-prepared to understand the complexity of our situations. The worse part is not knowing if any of the things I am going through could have been prevented. Worrying that there might have been a ticking time-bomb in my body this whole time. Questioning whether the doctors are ever going to be able to get to the root of the issue.
It can be hard not to get angry sometimes. Angry at the parents who didn’t care for me, angry at the doctors who don’t understand, angry at myself for not even knowing what normal feels like. I try to be calm, positive and understanding but I am human after all. My past may be behind me but the reality of my trauma is always somewhere close. It may not impact me the way it did before but it will always be a part of my history.