The Invisible Diagnoses

Two completely different sets of struggles. Both invisible from the surface—from the onlooker’s eye.

A beautiful, outgoing child. His tender sweetness lost amidst his struggles. His fun, infectious personality disguised by his over-the-top energy. His charm misunderstood. His affection a bit smothering. His chatter bothersome. His clinginess problematic. Hidden behind his eyes is anxiety and confusion as his perception of the world differs from most. Things we take for granted do not come naturally for him. Everything takes work, even daily routine. There is no insight or judgment, hence the constant need for supervision and guidance.

Unless you know my son well most onlookers only see his negative behavior. He is not capable of regulating himself: his body, his emotions, his mind. His body becomes easily overwhelmed or confused by the information surrounding him.

If your world feels out of control, how to you deal with it? You have developed coping skills. Ways to calm yourself. Ways to help ease pain, fear or discomfort. Some of us buy a bag of potato chips and binge-eat the entire bag in one sitting. Or perhaps, like me, you prefer to eat a king-sized chocolate bar. Regardless of your method, you have developed a way to cope.

His disruptive behavior. His poor choices. His impulsivity. His body is constantly in motion. He is out of sync. His motives aren’t malicious, although on the surface one could argue. He longs to socialize with others, but lacks the know-how. He wants to be loved and appreciated, but often is seen only as the bad kid (some prefer undisciplined) and, at the very least, immature for his age.

It’s easy to label with little detail or information. We all do it.

He may hit his brother or take a toy—constantly. On the surface, it may look punishable. All boys do it, but you can’t let him get away with it, you may say. But what you don’t know is that he lacks the know-how to deal any other way. Instead of verbally addressing the issue of the younger brother using a swing that he has determined only belongs to the older brother, he will push the younger brother off the swing in an effort to help the older brother. He may demand his own way constantly and it looks like he’s an obstinate or controlling child. But what you don’t understand is that it brings him great comfort to control as much of his out-of-control world as he can. Rigidity. Inflexibility. Sameness. Routine.

Yes, I hear you. You’re thinking he still needs punished. You’re thinking he can’t be controlling. He’s the kid; you’re the parent. Here’s where the biggest disagreements fester. They’re found in the responses to his negative behaviors. You must establish the core of each issue. If the root of the behavior is sin, then it absolutely needs addressed. If the root of it is another cause, then help him through it. Give him alternative, safe, respectful, constructive ways to handle situations and cope with uncertainties and changes in his life. Teach him how to interact with others in a kind and positive way.

After a negative interaction with him this morning I swept a few tears into my dustpan along with the dirt from my floor. I handled it with frustration rather than compassion and love. I felt like a failure. Everything is so incredibly difficult. Every interaction. Every conversation, even unspoken communication. Nothing is easy. I was pleading to God, not out of pity, but out of heartache. Out of the isolation in which the struggles cause. No one understands…but God. I know this.

And then there’s me.

I’m a busy mother and wife, who follows God as best as a sinful human can. I strive for perfection in my life and in my house, all the while appearing quite healthy. But I’m not. You could assume, based on my clean and tidy house and the various hobbies and talents that I pursue, that I am not suffering. As you watch me walk without a limp, seem to have full use of my arms and legs and a brain which fully functions, that I do not struggle. But it requires energy that—without medicine—I lack, even for day-to-day duties like cleaning, laundry, self-care and cooking. It requires a body that regulates itself. A brain that communicates with its muscles to work in a fully functional way.

I long to be the energetic 36-year-old that my mind still feels, to run alongside my boys, but my body won’t keep up. I long to use the talents God has given me on a regular basis, but my body won’t cooperate. I long to eat healthy and exercise regularly, but the aftereffect is too difficult.

You see, this morning I was given the confirmation of a second medical diagnosis. Suspecting a diagnosis is one thing, but hearing the diagnosis is a little shocking. But once the shock wore off I realized I am functioning no worse than before I knew. I’m still managing each day. And so, I must focus on that.

As a woman who’s struggling with life-long, progressive diseases, I worry about my future. My mind is clogged with what-ifs and how-can-Is. As a mother of a child who struggles so intensely, I worry about his future. The worry is two-fold. (But still never too big for God!)

Invisible diagnoses can be more isolating than if they’re obvious. Invisibility invites the question of believability and truthfulness. It causes others to question the sufferer’s motives and excuses. It shouldn’t, but it does. Humans are judges, hypocrites and shamers.

Often, I’ve felt the need to validate my son’s diagnosis and mine. Why? I shouldn’t. I don’t have to prove anything. But the world is critical, unforgiving and harsh. We give plenty of room for judgments but none for compassion, understanding and support.

Perspective is everything. (It’s not only important to have a godly perspective for your own life, but also toward another’s struggle.) Make a gigantic-sized room for compassion and support.

No one has any idea how difficult my days are and how I even feel. It’s not a cry for pity, but a cry for more understanding to those around us.

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