I hung up the phone and felt a familiar sense of dread.
“We have a diagnosis. It explains everything and I am so sorry it took us all so long to figure it out for him,” the doctor had said.
I could hear my son in the other room and tried to talk myself calm.
“We knew this was coming. She told you it was this a year ago. Having a final test that confirms it doesn’t change anything.”
Except it does.
It changes everything.
Both of my sons amaze me every single day with what they are capable of handling and living through. Both of them have significant behavioral and medical diagnosis that have often caused delays in treatment, symptom management and even outright dismissals of their illnesses.
Because they were both diagnosed with what are considered more behavioral diagnoses first (autism, anxiety, adhd, mood disorder) the path to their finally being believed and understood about their chronic illnesses was much, much longer than it should have been.
Moreover, treatment was difficult because the doctors we worked with would blame the other diagnoses for the symptoms, and then tell us to see our other doctor or psychiatrist. This went on for years. Years.
My children suffered, literally.
I thought I was making too big of a deal out of things, more than once. Worse, I was told I was making too big a deal out of things more than once.
Such is the nature of overlapping childhood illnesses.
This Is What Happens When Your Child Has Both Medical And Behavioral Health Diagnoses
My sons both have rare autoimmune conditions that significantly impact their day to day lives. These conditions can be debilitating and are capable of causing substantial medical harm. Worse, very little is known about their diseases or how to help.
“People living with a rare disease often have few, if any, effective treatment options,” says NIAID Director Dr. Anthony S. Fauci.
Perhaps my oldest son’s rheumatologist said it best. “We know about 15% right now. Only 15%. We need to listen to our patients and not think we have the answers. Doctors are like anyone else. We want to help. We want to feel like we have the answers. But when it comes to these types of conditions, we just don’t.”
The problem we have faced, over and over again, are my sons’ behavioral diagnoses being blamed for their physical symptoms.
He’s throwing up every day because you are giving him attention for it.
Well if I were him, I would just stay in bed all day too. You need to challenge him to get out of his comfort zone.
I know he is saying it hurts, but he has been saying that for a year now. I think this is just a way for him to manipulate the situation.
I know that there are times when children will experience psychosomatic symptoms. I know that anxiety often produces stomach aches and pains. I know it is quite possible that I have inadvertently indulged my kids and their anxiety from time to time. What parent doesn’t?
I want you to know is that this is the hardest part.
Having children with overlapping, serious diagnoses means I never really know what is causing what. It means our doctors are rarely sure either.
Thankfully, we have a team of doctors right now that work well together. They see my sons in totality and not just one isolated diagnosis at a time. They are open-minded and willing to admit when they just don’t know.
And it has made all the difference.
For the first time in eight years, both of my children are truly being treated for their illnesses. All of them.
If you are struggling with similar circumstances, I am so sorry. I know, first hand, how gut wrenching it is to see your child suffer and not be able to help.
My only advice is to trust yourself. Trust your knowledge and experience of your own child. Find doctors who trust you as well.
We do the very best we can. Sometimes, it’s not even close to enough, but we keep learning, we keep trying and we keep going. I have said it before and I will say it again.
No matter what the diagnosis, the very first treatment plan is always love.