My child doesn’t have an illness that you can’t see, he has an illness that you don’t want to see.

I dread every doctor appointment.  I cringe when I open my email and see how many new messages I have.  I hold my breath every time the phone rings.  It’s a vicious cycle of expectations exceeding reality, and me being the one who has to play a constant shell game with schools, doctors, and psychologists.

Since my son began experiencing debilitating anxiety last year, I relied on the medical world to tell me what to do in order to help my son.  It became clear immediately that psychological disorders in children are inevitably linked to parental influence.  Within weeks, my son was shuffled on and off medications, therapy treatments, and tests without any satisfactory results.  At this point, instead of further investigation, I was deemed the root cause of the problem, and he was labeled as defiant.

Defiant.  My fifteen year old son, who has never caused anyone a moment of stress, was labeled as defiant.  That still amazes me.  Looking back, I can recount so many contradictions in people’s logic about my son that it makes me dizzy.  The truth is, it didn’t matter what my son did or didn’t do, someone would find fault with the situation.  I was criticized for not giving him enough responsibility.  When I mentioned the things he already did in the home, I was told to create new chores, as in fabricate situations that would require him to do things that weren’t really needed.  He did everything, and without complaint.  Then I was accused of having a controlling relationship to the point of abusive, because he didn’t argue with me or give me a difficult time as most teenagers would.  So, essentially, he is too non-defiant?  And I’m a bad parent because I raised a respectful teen?  I’m still confused over that one.

These days, my son is not much farther along in his recovery than when we started.  Not for lack of trying, that’s for certain, but none of the treatments worked in a way that he has been able to overcome the anxiety.  Now, we are treating his newly diagnosed Babesia, Bartonella and Lyme disease. So, we have moved from a mental health stigma to a mental health and controversial medical diagnosis stigma.  This is not making things any easier on us, and more importantly, my son is not getting any better.

Inevitably, the doctors will be asking how my son is feeling.  Then they will ask what he has been doing all day.  This really annoys me; what do they think he does all day? He’s trying to get better, he’s resting, he’s taking his medicine, he’s bored out of his mind, and he’s worried that he will never get better.  But, in true teenage fashion, he will usually answer with a shrug and a “not much”, which leaves the person asking to create a mental picture a wayward teenager sitting home playing video games, eating junk food, and laughing about getting one over on the system.

Next, they will turn to look at me and ask what I have done to try to get him in school.  They will ask what progress has been made, and everyone will ignore the fact that he has been diagnosed with an illness that many adults spend years trying to recover from.  I will dance around the questions hoping that they will not see me as the ‘helicopter parent’ I have been portrayed to be; at the same time, I will try to honor my child and his illness enough to advocate for him as best I can.  It doesn’t matter that the charges were unsubstantiated, once a parent has been accused of Munchausen-by-proxy and it’s human nature that the next person will keep that in the back of their mind while interacting with the parent.  It’s like telling a jury to ignore what they heard, it isn’t possible.

I may be an overprotective parent, but that is a result of what we have experienced, not the cause of the situation.  I’m sure if I didn’t try to help my child, someone would claim I was negligent and site me for that.  It’s a no-win situation as a parent with a child suffering from mental health issues and/or tick borne illnesses.  I don’t want to be the audience for every practitioner that feels compelled to climb their soap box when I come in to the office, I just want my son to get his life back.

I’m tired of being scared to voice my concerns, or give my input, or ask too many questions.  No parent should feel like a criminal for trying to help their child be healthy.  No child should be labeled as difficult for having an illness.  I guess it’s ok to be sick as long as you don’t complain about it, stand out in any way, inconvenience anyone, or ask for help.  I wonder how we are supposed to raise caring, compassionate, successful children when this is the example being set for them to follow.