Living with a hidden Disability

Authors note:

 I am new to the site, so I have not read all of the comments, suggestions, etc.    I want to share what I think might be a different point of view.  Throughout the story, I will be describing various situations.  I am sure some of those will not be accurate.  I am by no means suggesting that I know all that goes into pre-school, school, or other events described in this posting, so please take these as patterns for how a day goes, rather than an exact prescription of a day.  It is my story, so I am taking liberties to create patterns rather than focus on exactly what happens in a given day.  If this prevents you from following the story, correct the daily outline – for yourself –so that you can follow along. That is what is most important here anyway.


This is the story of a child (Coffee Cup, abbreviated CC) living in a family, going to school, and all of those "normal" things.  CC has a sibling named ZZ.  ZZ is the older child by two years, so it isn't much of an age difference.  Both parents are educated, have a big extended family, live in a lovely home, and generally don't need or want anything.  For a child with a disability, this is the best view of a family situation.  Later we can talk about what it would be like not to have this level of stability, privilege, and social standing, back to the story.  ZZ and CC are expected to do all of the typical things that children do, clean up, help around the house, do chores, etc.  The difference is - well, things are not "normal or typical" for Coffee Cup.   With that – here is how life looks from CC's point of view.

During the first 2-3 years of Coffee Cups life, everyone thought CC was so cute look how CC could jump from one idea or activity to the next - look at how well CC could help mom/dad/friend/grandparent with that job that CC had not seen before - how amazing!!!  Praise was bountiful, and attention was all focused on this new bundle of joy.  CC felt like he/she/they could do anything!!!  Life was AWESOME!!!

As CC got older, the expectations started to change.  Things all needed to be done in a particular order, a certain way.  If something was not done in the "standard way,"; well, then it was wrong, bad, stupid, silly, took too much time (I think you can follow where this is heading, if not, hang in there – it will become clearer later).  As all of the comments and body language were being communicated to CC, they just started to feel dumber and dumber.  A failure before CC was even in school. 

Now we start school - all of the expectations change AGAIN!!.  CC felt that he/she/they couldn't keep up.  They would come down for breakfast and "forget" to bring sox (or any other item).  The shame cycle ratchets up - CC, why can't you remember to bring the sox downstairs - I don't need to tell ZZ, your other sibling, to do this all the time.  Because of you, ZZ and you will be late for school.  Looking at the clock, never mind, I will have to drive you to school.  Again  I will be late to work.  Then the adult further enforces this shame with the "huff," "eye roll," "shaking of the head," and sideways look to the other adult. 

Given this group's nature, I expect we have all seen, heard of, or been a part of this type of interaction.  I expect it happens quite often.

Now we are in pre-school; generally, the way these sessions work is you have activity time, reading time followed by quiet time, food, and repeat.  Well, for CC, the activity time is excellent, except that they don't share well – they want to run and do anything to keep moving.  This leads to an adult coming over after another child (RR) has complained about something CC has done. 

The teacher (authority figure), now CC, RR, told me that you are not sharing.  CC drops their head down.  You see, at this point, CC has no idea what the teacher is saying.  For two reasons – it was 15-30 minutes ago, and RR said they didn't want to play any longer.

What is troubling about this situation is that CC isn't seeing the non-verbal cues used by society at large to communicate what is and isn't happening.  CC didn't realize that RR did want to play but gave up since CC didn't understand or see the non-verbal message. 

Now we have CC being "shamed/corrected/rebuked" by an authority figure for not "playing nice" with another child.  CC won't say anything since they are either baffled, don't know what to say, or cannot form the thought fast enough for the situation.  So CC walks away from this encounter, going, "What just happened? I don't understand any of it. What did I do wrong?"

Notice the start of a significant pattern for CC – scratching their heads and not understanding what happened.  It is followed along with frustration, which turns to anger since people are not explaining things that CC understands.  My best explanation of this would be to ask a blind person why they tripped over something.  A less charged (by the way, why is this so charged since ADHD is a disability, I have often found that hypocritical), when a person speaking a foreign language asks for directions, and you provide them in a way they can't understand.  Then you make them feel stupid, dumb, like an idiot that they didn't understand.  I hope we are all seeing many judgments placed on people/children etc – for not meeting our expectations.  We have yet to put ourselves into their situation or, as often suggested meeting them where they are at this time.

Okay, move along – we in school during a time (before we had programs to "catch" many of these disabilities).  CC is failing at school; they can't read as well, so they get some special reading lessons, but CC is so far ahead in other areas they are placed into the "advanced track."  School is really interesting now, as you might imagine. CC's parents are thrilled!!!  CC is scared to death!!!  CC "knows" that he isn't as bright as the other kids, so now he/she/they feel even more isolated.  CC can't talk to his parents about this, can't speak to his friends, because he is now with the "smart kids" so that other kids won't talk to him as much.  What does a child do when they feel isolated, alone, and miss understood? 

CC either starts to withdraw or move to an area that they are successful at in school.  CC has fewer friends or only friends in the area that they are successful at, pick something, sports, art, drama, e.g.

Things are becoming more contentious at home, but CC's parents don't understand why CC is so moody.  They don't understand CC's interest in video games and why they spend so much time online.

Instead of conversations – there is a growing tension in the house.  The discussion quickly turns into yelling and anger and lashing out in frustration of not being understood.  CC appears to have a "chip on their shoulder" all the time.  They will take any situation and turn it around and say it isn't "my fault."  They will stomp away and retreat to a safe space or perform some physical activity until they can calm down.

Realize that by high school, these patterns have happened billions of times.  CC now has a great deal of practice at protective behaviors but maladaptive to many other situations.  Usually, people with ADHD are gifted or have very high IQs, so they are talented at figuring out how to get things done – even if it doesn't always have the best outcomes.

When I speak to people who don't have this disability, I use this as an analogy – which often helps. 

For a person with this disability, life is like driving in snow white-out (or a rainstorm when the wipers are not enough), where you can't even see the car hood's front.  You are so focused on staying on the road, keeping people safe, it is taking every ounce of your attention.  Then you have a person in the car asking all the time – "are we there yet" – in no time, you lose your patience and scream back, "No, we will get there when we get there."

After this interaction, the car goes to what I call "concrete" – no one will say a word until that cloud has passed.

So, why choose to give you a view of life with the disability of ADHD?   Being diagnosed later in life, you see the challenges and hurdles we have experienced.  Also, to understand that, as a brain, rewiring will take 1-2 years of positive experiences.  Diagnosed at 46, I am one of those people who have patterns to change.

I was handed the ADHD Effect on Marriage and told to read it by my spouse (who doesn't have the ADHD disability).  My response when I saw the title was anger – you see, this once again appeared to be "someone" wanting to "fix" me.  By the way, I have been on meds since diagnosed, so being on meds was not the reason.  Also, meds help to manage a situation; they don't "make it go away." While reading the book, I noticed some common issues.  See them noted as issues below.

If diagnosed as an adult, you have spent all of that time creating patterns to protect, hide, and adapt to situations.  We might appear to be happy and glad on the outside, however fearful, not trusting, and protective on the inside.  Realize that my worldview was that I am inadequate, incapable, e.g., in some way, shape, or form.  Shame response is robust.  Generally, we have patterns that, while protective, are often counterproductive to our desired outcomes.  We are often aware that the common thread is us.  It is just hard to rewire 46 years of patterns. 

Also, as the spouse, you are getting something from the relationship in the current state.  Changing this will require you to change patterns as well.  If the person with the disability changes, how will the person without disability manage to have their individual needs met?   

It is complicated to separate the two people spoken about when using ADHD spouse and non-ADHD spouse.

Many people with an ADHD disability also suffer from other coexisting conditions; mine is a disability of written expression.  Something to consider when speaking with a person who has this disability.

This book would be better if it highlighted living with a spouse with a disability.  Granted, that would not have been as "catchy a title."

Many of the strategies in the book have a foundation in trauma-informed care prosocial interactions – see these links for other materials:

Child trauma Academy:

A book by Dr. Perry and Maia Szalavitz (Author)