Why Life With Chronic Illness Has Made Me Invisible

I try my best to only write on my good days because, at the root of it all, our journey has made me so grateful for all that we have. Besides, I really don’t want to be that “poor family,” you know the one that gets your thoughts, prayers and pity. But they are not all good days, and the truth is that this invisible life is hard. It’s lonely, it’s draining, it’s full of “what ifs” and “cannots,” and it’s so scary. I’ve just gotten so used to carrying all of this weight that it appears to be much lighter to anyone looking in. Or maybe they just don’t see me.

This life is invisible because no one sees all the work that happens behind closed doors. It’s full of therapy appointments — 10 mandatory hours a week, in fact. It may not sound like much, but when you add in a child that is in pain, who is in too much pain to walk today before his first session of three that day, it’s a lot to bear.

It’s full of regular doctor’s visits, most of them over an hour away. Making that drive with anxious nerves and a child who is on sensory overload in the backseat is almost too much on top of the appointment itself. Each time we talk to a doctor, it is like preparing for a battle that we know that we’re going to lose. There’s always something else, something more to watch for, another specialist to see.

It’s full of work instead of play. All play has a purpose and it becomes work, whether the focus be motor skills, speech and cognitive development, or visuals, it’s always something. It leaves little time for true fun, even though we center therapies around play.

It’s too full to post about on social media, or send out in a newsletter to friends and family. Between medical commitments, a full-time job, side jobs and simply raising a young family, my schedule is loaded without much wiggle room. Our family simply has to make it work in so many ways. And because I don’t have flexible time to commit like I once did, and because I have to say “no,” I become invisible.

This life is invisible because it’s not typical. Let’s face it, our family is glanced over because our life isn’t white picket fences, Little League, piano practice and play dates on Saturday mornings. I see all of the positive comments on the photos of kids doing some amazing things, and I share the pride with the happy parents. Truly, I do, even when it stings, too. What you don’t see in the photo that I posted of us walking in the park is that those steps taken on uneven ground were difficult ones for our son to take. You don’t see the tears from his legs hurting him, but wanting to keep up with the other kids so badly. You don’t see what it takes for him to keep going. I’m so proud, but all others can see is a kid standing in grass. Our success doesn’t look like yours, so it’s often overlooked. We become forgotten. We’re invisible.

This life is invisible because I choose to carry on. I actively choose to exude, happiness, positivity and joy. I don’t allow disability to take over our lives. It’s just a diagnosis not a prognosis, and most definitely not a plan on how to live, but people don’t know how to treat “different.” Our family is more than this, it exists separately from any disability. It needs to, or I’d be consumed by it every single day. I’m invisible because I choose to hide from the pity.

So many days, I just wish to be seen. Until then, I’ll keep leading this invisible life. Maybe soon, I’ll be be seen by someone. At least I hope so.