EN&MH: When You Hear a Scary Diagnosis

As a woman who lives daily with mental illness, I spend a good amount of time reading up on mental illnesses. I am lover of knowledge when it comes to these things. I read up on information, look up the newest studies. The mind is a fascinating specimen to study. It invites in environmental, current and past, genetic, and experiences before it finds how it will work in any one individual.

This love of the mind also becomes scary at times. The time when it comes the scariest? When I hear a diagnosis and I know the studies behind this specific mouthful of letters.

When I opened up my sons school evaluation, I read straight through it. I laughed a little at a few of the comments, ones I wasn’t surprised to see. There were a few that gave me so much hope. Then I got to the page where the psychologist highlighted what mine and my son’s teacher mentioned in our three page fill outs. And there was a lot.

The school psychologist cannot diagnosis, nor can they say what they think is going on with your child. They can simply say “these are the behaviors you said you saw” and if you bring up a specific diagnosis-say “I did see this”. I’m well aware of this; I worked in the school system and both my parents are public school educators.

But that list, of all the computer generated possibilities that came up with the behaviors we mentioned…it scared me. It stopped me in my steps. I sent my best friend a text message in tears, because could I really do this?

I had the same reaction when my older daughter had the letters RAD brought up in a family therapy meeting. Even following my own therapist mentioning discussing borderline personality disorder as something I was living with.

It’s the curse of being so intrigued by the human mind that I am on the flip side educated on statistics and worst case scenario stories. And in this day and age-I’m certain I’m not the only mama, wife, or sister who does that. With Google right at our fingertips, we can look up ODD, ADHD, RAD, whatever we feel like looking up with the click of our fingers. We don’t even have to walk away to start looking it up, with smart phones!

I don’t think there’s something inherently wrong with looking up information or being well educated on something your child is struggling with. However, at times this superhighway of information can be a little overwhelming. I want to share with you guys today six ways I manage to deal with a diagnosis that may scare me.

Make sure your source is reputable.

Y’all we all went to high school! We know that sources can be reliable or they can be unreliable. When you are reading up on a diagnosis, make sure you are reading a reliable source. There are people out there who thrive on worrying and scaring parents new to specific disorders. Take a step back from what you are reading and check to see how truly GOOD this source is. I get links sometimes to completely off the book websites with no studies connected to them. Please make sure you’re not allowing yourself to worry over something that is not really there. (Hint, if your website says “THIS CAUSED YOUR CHILD’S THIS” it is probably not reliable.)

Listen to the professionals you are working with.

I once had a conversation with a therapist who told me “Google doctors are going to kill a lot of patients, but still put me out of business.” Hear me out-I do not advocate blindly following doctors. They are human as well. However, I do advocate listening to what the professionals you have on your team. You may do this with a grain of salt, you may hear what they have to say and realize it’s not best. If that is the case, find another professional who works with your family dynamics and beliefs a little more. As a Christian, sometimes it’s hard to find professionals who share our beliefs and is willing to incorporate them in my, or one of our children’s, therapy…but that matters to us. Don’t just discount everything a therapist or doctor says because of that difference though! The best therapist I’ve ever had wasn’t a Christian! Don’t let your personal preferences or what you feel is best get in the way of hearing what professionals who have done this for years have to say.

Let yourself FEEL these feelings.

I felt a lot of guilt on top of my fears, worries, and anxieties because “I shouldn’t feel this way.” I spent a lot of hours beating myself up because I should know better. The truth is though, these can be life altering diagnoses. The alteration isn’t necessary a bad thing…but it can be something that brings up a lot of unknown fears in the future. There is a process that you need to go through after you hear these words. One of the most important part is letting yourself feel what you need to feel. Find a close friend to talk it over with, discuss how you’re feeling with your child’s therapist or find your own. It’s important you deal with the emotions before you become bitter with them. Let yourself feel those feelings!

Worst case scenarios are the stories that sell.

This is pretty straightforward. I urge you to remember that the worst case scenarios that make it to the papers or on Lifetime as movies..they are just that. Worst case scenario stories. Yes, some diagnoses have very worrisome behaviors that come along with them. I will never deny this. But a lot of those stories sell because they play right into our greatest fears.

Listen to adults living with the diagnosis.

With Autism Awareness on the front page this week, this is one that I feel the need to scream from the mountaintops. When dealing with a diagnosis, the most important voice you should listen to are those living with it. Far too often we silence adults with mental illnesses, we pretend that these disorders disappear at 18. I can’t count the number of times I’ve heard an autistic adult be shut down or closed out of a conversation because they weren’t saying what a parent thought was the truth. Hearing the adults or even other children living with any diagnosis can help you immensely as a parent: IF YOU LET IT.

At the end of the day: This is the child you loved before this diagnosis.

I am an advocate for getting a diagnosis. I will never be the person who says “Well, what if it’s not that?!” A diagnosis can provide so many resources and referrals within the school system. It can give life changing assistance and accommodations. You can find therapies and tools to use to make your child happier. It will change how you approach behaviors and can make a world of difference with how you parent.

But a diagnosis will not change who your child is.

I know you may have a hard time accepting and not worrying over what you just heard, but this word will not changing who your child is.

If you are having a hard time with a diagnosis, I am here for you! Please know you are now alone in that struggle.

7 thoughts on “EN&MH: When You Hear a Scary Diagnosis

  1. This is such great advice, Lauren! I love that you talked about letting yourself feel the feelings! We try to block things out too often that just need to be felt and worked through. 🙂

  2. This is great advice- especially about looking for reputable sources and the reminder that a diagnosis doesn’t change who the person is. Knowing that my older daughter has some sensory issues helps me parent her with more understanding.

  3. Oh my goodness, I found myself nodding my head along with all of your points. Thank you for sharing this! It really is so important to listen to the professionals you’re working with, and if you feel like you can’t trust them then you need to find someone else, or maybe you just need a little bit of extra time to come around, you know? I love what you said about this still being the child you loved before the diagnosis, they really haven’t changed at all, just your understanding of the way they work has.

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