Last June—right around this time, actually—Ollie got a mosquito bite on his eyelid that made his whole eye socket swell up so much that he couldn’t open his eye. It was frightening and stressful because I had no preparation for that. I had no idea how to handle it, what to do, other than to call the doctor. And luckily for us, it turned out just fine in the end.
But while his eye was healing—it took about a week—we obviously had to go on with our lives as normal. One of the things we look forward to at the beginning of the summer is the food truck rodeo at the Historical Museum. We weren’t going to let a little eye swelling get in our way of a nice evening. So we went as usual, and got our food, and went to sit in our usual place. And it was during this very brief walk, that ultimately felt very long, that I began to notice the stares. Other people were openly staring at Ollie’s face, and some were even whispering amongst themselves while staring at him. Yes, he looked different, but he was still the same Ollie. I truly hadn’t realized how brazen people can be in the presence of someone else. Like who the hell were they to judge my child, a little boy? And I thought to myself at that moment, “I imagine this must be a little of what it’s like to have a child with special needs.” Now please excuse me if this thought was inappropriate for the situation, but at the time, it really felt like so many people were looking at us differently, waiting and watching to see what Ollie would do. And it broke my heart. And this was only one day that I experienced this! I thanked whatever powers that be or forces of nature at that moment that we ended up with two healthy, well-adjusted children without any significant health, developmental, and/or learning concerns. I couldn’t imagine the strength needed to have a child who was anything but typical—I hate to use the word normal.
Fast forward a year to now, and I’m singing a different tune. We are now amidst figuring out how to live with Ollie’s newly diagnosed anxiety disorder. It feels like our world was turned upside down practically overnight, even though, in retrospect, this was a long time coming. It had been right in front of us for so long, but we had no clue.
And though I don’t want to place blame on anyone or anything, certainly because in placing blame, I would also be claiming that what Ollie has to deal with is something regrettable, which it is not. But I suppose I want to point out that what appeared to be just personality characteristics, because of society’s continual (though slowly changing) ignorance of what mental illness looks like, were really early signs of his issue. What I thought was just excessive empathy and sensitivity was his mind overthinking sad or scary scenarios. What I thought was age-appropriate uncertainty at being new to school was really obvious separation anxiety. What I thought might have been normal indigestion or the need to poop was really physical symptoms of stress after his anxiety was left uncontrolled for so long. I really had no idea. But I should have.
Even as someone who suffers from anxiety and depression herself—and as I now can realize after being educated about this topic, did as a child as well—I didn’t have the needed knowledge or tools to look at my son’s behaviors and spot something wrong. And again, I don’t want to place blame on anyone specific, but to blame society as a whole for constantly overlooking mental health issues and for this deficit of what should be common knowledge.
You see, we all know about children with ADHD or signs of Autism, or what a speech delay looks like. Any good pediatrician these days will ask the parents at every routine checkup for signs of these things. But never did I ever get asked any questions like, “Does your child have a difficult time leaving you?” “Does your child ever complain of being lonely and/or scared?” “Does your child seem to worry a lot or engage in repetitive behaviors when upset?” Never. Not once. And maybe if I had, I would have picked up that these behaviors were not, in fact, normal for someone of his age. Instead of thinking that perhaps he was just a little immature or stubborn or too sensitive, I would have caught the warnings before they got out of hand like they are now.
Maybe. Maybe not, of course. But the fact that these issues were never even brought up upsets me. Because to me, and loads of other people speaking out lately, it seems that not only is mental illness very much misunderstood, it’s also misrepresented as something of less importance than other conditions. And I can back this up.
Here are the statistics for numbers of people/children diagnosed with the following conditions:
Autism—approximately 1% of the population
Sensory Processing disorder—approximately 5% of the population
ADHD—approximately 11% of the population (But I must add that there are numerous studies pointing to misdiagnosis of anxiety disorders and/or depression as ADHD in children as symptoms of these disorders are far different in children than in adults.)
Speech/Language Disorders—approximately 7-8% of the population
Mental Illness (Broad category)—approximately 20% of the population
Anxiety Disorder (more specifically)—approximately 8% of the population
Now I realize these are not the only conditions parents find themselves facing when raising children. These are just some of the more easily recognized and understood conditions. And I’m also not implying that any of these conditions is any easier or more difficult to live with. I just want, again, to point out that even though mental illness (in general) ranks the highest for diagnoses in children (and adults, I might add), it’s often the least understood, accepted, or treated.
Unlike so many other conditions, mental illness symptoms often get either misunderstood as other things or pushed aside as something the person should be able to control. Would a parent whose child doesn’t make eye contact or fusses excessively when touched push that away as nothing? Would a parent whose child hasn’t spoken a word by age 2 push that aside as being a “late bloomer”? I hope the answers to my previous two questions would be a resounding no. And yet, when a kid is so distracted by whatever is in his/her mind that they can’t focus on anything else, we tell them they need to “pull it together or else”. Or, when a child is clinging to his/her parent, refusing to let go, figure they’re just a little immature. And when we do these things, whether intentionally or not, we set the child up for an increase in the condition.
Here are some more facts for you:
Approximately 60 percent of adults, and almost one-half of youth ages 8 to 15 with a mental illness received no mental health services in the previous year.
One-half of all chronic mental illness begins by the age of 14; three-quarters by age 24. Despite effective treatment, there are long delays−sometimes decades−between the first appearance of symptoms and when people get help.
Approximately 26 percent of homeless adults staying in shelters live with serious mental illness and an estimated 46 percent live with severe mental illness and/or substance use disorders.
Approximately 20 percent of state prisoners and 21 percent of local jail prisoners have “a recent history” of a mental health condition.
Seventy percent of youth in juvenile justice systems have at least one mental health condition and at least 20 percent live with a severe mental illness.
Serious mental illness costs America $193.2 billion in lost earnings per year.
Over 50 percent of students with a mental health condition age 14 and older who are served by special education drop out−the highest dropout rate of any disability group.
Suicide is the tenth leading cause of death in the U.S. (more common than homicide) and the third leading cause of death for ages 15 to 24 years. More than 90 percent of those who die by suicide had one or more mental disorders.
Think about this: Heart disease is the leading cause of death in men and women. It is the cause of death for 20% of men and women each year. So, someone with heart disease is 20% more likely to die from cardiac arrest than people without heart disease. That’s pretty awful and scary. BUT, people with mental illness are 90% more likely to die from suicide than people without mental illness. And this is considering that people with mental illness also account for 20% of the population. That’s terrifying for someone either suffering from mental illness or a loved one of someone who is. But where are the ad campaigns highlighting how we can reverse these statistics? Where are the constant reminders at doctor’s appointments to take better care of your mental health? Why do we act as though mental illness is a brand new condition that we’re still trying to get a grasp on?
Because despite all these things we know about mental illness, it is still one of the most highly undiagnosed and untreated conditions people suffer from.
But how can anyone outside of the medical profession see these symptoms for what they really are when the information is just not out there? Worrying, stressing, being afraid of something, feeling lonely or lost: these are all very common feelings that everyone at some point experiences. But what makes the difference is when these feelings are negatively impacting the quality of life of the sufferer. Then it becomes a disorder. But perhaps because so many people have experienced these things and have gotten through it, they seem to think that anyone can and should also. But like I said to my husband, “Not to be an asshole, but if you don’t suffer from mental illness, you can’t possibly understand.” You can’t understand the feelings of futility. You can’t understand why someone would not want to feel a certain way, but be powerless to do anything about it. You can’t understand how hearing someone tell you to “just get over it” makes it worse. You just can’t understand.
But that doesn’t mean you can’t help. It doesn’t mean you can’t spread awareness. It doesn’t mean you can’t support someone who does know. It doesn’t mean people who have mental illness have to suffer in silence or ignorance.
Because mental illness does have a genetic component to it, it is very likely you know or will know someone suffering from mental illness. No matter how good their life may seem, brain chemistry imbalances trump all else. Remember, you’d never tell a diabetic to just stop not processing insulin correctly. So you can’t possibly expect a person with mental illness to just stop feeling anxious or scared or depressed. (Please also remember depression is not the same thing as sadness, so please don’t use these words synonymously.)
So what does that mean for our family? Well, it means that we will have to work as a group to overcome some obstacles together. We’ll need to see a psychologist, both individually, and as a family. We’ll need to be more patient. We’ll need to be mindful of using effective coping strategies and not letting our tempers rule our behaviors. And we’ll have to remind ourselves daily that we are living with loved ones who have special needs. Perhaps our needs are not something that’s seen as easily as Ollie’s bug-bitten swollen eye. We look just like everyone else. But we have special needs nonetheless.
I’m hoping that homeschooling with help ease a bit of Ollie’s anxiety in being left with others. And I’m hoping our time together will not reinforce that I’m the only safe person, but that he can use what we learn together—in his time and comfortable pace– to make himself feel good enough to function well. And I’m also hoping that him knowing he’s not alone in this will help him to feel less worried that others are judging him.
But this is not something that my family can do alone. We can’t normalize mental illness for everyone. People will continue to stare when he has a meltdown for what appears to be no reason. He will still feel fear and uncertainty. I will still feel guilt.
But if everyone who reads this can do one thing toward normalizing mental illness, it can become just another condition. If you see something on the internet, share it. If you hear a comment you know is incorrect, correct it. If you see someone out in public who is having a hard time, smile at them warmly or offer a hand. If you know someone who has a mental illness, remind them you are there. There is certainly power in numbers and the ability for something to go viral. And if we all work toward bringing greater awareness and understanding to these issues, we will all benefit.