Grieving the Diagnosis of a Teenager

Last time I spoke about Newborn Screening and how many chronic and rare diseases are caught on that in the first couple days of life. Some diagnoses are even caught prenatally. These parents grieve tremendously for the life their children will not live as they expected, while they still celebrate having them of course. Many others with rare diseases are diagnosed in their adult years, sometimes after years of a long and aggravating diagnostic journey. They grieve for what their life had always been and what they thought it would always be. For a rare few they are diagnosed in their teenage years, and that was the case for my son and our family....

I have told you before that prior to his diagnosis he was an outstanding athlete. And he was. Some of our first signs that something was off were in athletic events - either his running times increasing or lack of playing time on the soccer field. In addition to that he was an above average student who excelled in spelling and math concepts - I have shared how many of those things I believe changed at a cognitive level from the trauma of his illness or the illness itself. And he had friends, good friends who he enjoyed spending time with and he could count in the ways he needed them at the age he was at. So, prediagnosis he was an athletic kid who was a good student with good friends. He also was mischievous and could be very temperamental - just so you don't think I am making him sound all perfect or anything!

I honestly believe that if you would have asked him about his future at that time his answer would have been something like this - he would have gotten in to college playing soccer (at some level) and figured the rest of life out as it came - probably business or criminal justice.

When he got the diagnosis, it seemed like everything changed. Slowly he was not participating in sports at the same level - number one was now crossed off the list of his future plans, which threw everything else off. He lost his identity before he really even had a chance to really form it. He was 12 at the time of diagnosis, so he did not have a chance to really know who he was - he probably never really knew what it felt like to be healthy. We are guessing, looking back that he was sick from very young, if not birth so he honestly probably just gradually got sicker and sicker and never felt healthy which is a really hard thing to think about.

By the time he is learning who he really is in his mind he is no longer an athlete though he has a lot of athletic ability and plays basketball almost daily. While he's still very intelligent in how he looks at things, cognitively things have changed and he does not "test" as well, and we all know that matters in educational settings. After all he has been through he has lost his friends - they either grew apart as he distanced himself from sports or there was a lot of bullying after some of the medical issues he experienced where he chose to distance himself. So, this once athletic kid who was a good student with good friends - now spends a lot of time resting when he doesn't feel well, playing video games, taking general education credits online and working part-time while he finds himself. His whole identity changed due to his Addison's Disease.

I cannot speak from the experience of having a baby diagnosed or being diagnosed as an adult though they definitely come with their own grieving, hardships and struggles. I tell this all from our experience. I can tell you that being diagnosed as a teen - the age when you are just starting to find out who you are throws your whole life a curve ball. Some children can adjust to this curve ball and just "roll with the punches" and some need extra care and help to navigate the unknown that lies ahead. These children sometimes need mental health services, but also need people around them that love and accept them and allow them time to find themselves.