Living with Invisible Illness & Disability

A quick glimpse into what shapes my days and lifestyle could show someone a lot.

My days would show a commitment to a healthy morning and evening routine, yoga and exercise twice a day, meditation, walks, journaling, music, and books. A burning desire for knowledge and self growth. A simple home, full of love, shared with previously rescued animals.

It would show the life of someone living intentionally and slowly.

But what a quick glance doesn’t show - well, that’s a lot too.

Doctors appointments. Therapy appointments. Medications. A world where antipsychotics and abnormal experiences are the daily normal discussion, where self-care isn’t a choice, and Sims’ Symptoms in the Mind is the next new read.

Living with an invisible illness can feel confusing. Imposter syndrome-y, if I’m honest.

From the outside, I usually look well. I look “normal” and well-maintained, even happy.

But on the inside, living with an invisible illness or disability has another side that most people don’t see. A side that most people don’t want to see. But to see a person whole, as they truly are, means appreciating every part, even the parts you don’t fully understand or can’t empathize with.

I sometimes feel like I’m stuck between two worlds. The inside me. Or the outside me. Well or Sick. The world needs me to pick one.

But I can’t choose either. Choosing well means my essential needs go unrecognized and ignored. But being sick, playing the part of being the mentally unstable sick girl, leads me to a hopeless place where recovery is so distant that it might as well not even be an option, a place where people automatically assume I can’t.

I’m not really sure where I can belong. Maybe I’m just not meant to belong.

Lately, it feels like my illness gets to tell my story, and I’m rarely even invited to the conversation. Once people know I’m living with mental illness, the rest of who I am somehow gets lost in the fray, and they assume my illness is my story. My whole story.

I have Schizotypal Disorder (Schizotypal Personality Disorder), or StPD.

The disorder is classified in 2 separate ways between the DSM (the United States diagnosis criteria) and the ICD (the World Health Organization’s diagnosis criteria). The DSM-5 classifies it as a personality disorder. ICD-10 classifies it as a low spectrum form of schizophrenia.

In mental illness, comorbidity with illnesses is common. Meaning, it’s common to have more than one diagnosis alongside your primary diagnosis.

I also have CPTSD (Chronic Post-Traumatic Stress Disorder), sensory processing disorder, a provisional diagnosis of ADHD, and traits and symptoms that strongly suggest a possibility of OCD.

Until about 5 years ago, I did a pretty good job of surviving my mental illness. I definitely wasn’t thriving, but I was managing to live a somewhat normal daytime life, even though a lot of my nights and close relationships could somewhat unstable.

But 5 years ago, something shifted in me.

I began struggling to keep up the facade and saw myself slowly begin to lose my grip onto reality.

When invisible illness begins to cause disabling impacts in one or more areas of your life, it can rapidly become even more confusing, not knowing who to turn to for help or support.

Living with an invisible illness or disability means living with an illness or disability that is not is outwardly visible to others.

This can often cause those around you to assume you are doing better than you truly are or even assume you are completely fine!

It can often times leads to isolation, depression, and a denial of what is happening as you slowly slip downward.

There is a loss of control felt over our own lives, everything becomes an emergency, we begin to hide the pieces of our lives that are unraveling, and sometimes it feels like there is only one way out of the mess you feel so lost in.

It wasn’t until I hit one of my lowest points with my mental illness that I began to realize the resources that are out there to help those who are barely managing to survive on their own.

My desire is to help bring those resources to the attention of those who need them most.

To help those who are struggling get the additional care and support they need BEFORE hitting rock bottom.

Being open and available to resources and help requires just one thing from you though - honesty.

Sometimes being honest about where we are in our battle with mental health can feel dangerous. But what’s more dangerous?

Not getting the help you need because you were too scared to ask.

Mental illness rarely gets better on its own. It requires support, help, and understanding from those around you. It requires a full commitment and effort to improving and striving to find more meaning and understanding and acceptance within ourselves.

But most of all, it requires honesty about where you are and what you need at that time.

You may feel uncomfortable being honest to a complete stranger about the state of your home or a situation at work.

You may feel like you don’t even deserve the help because others have it worse or you may feel like your situation is all your fault.

It may be difficult or terrifying to open up to your doctor about what you’ve been thinking or experiencing, but it’s more terrifying to think about what will happen if you don’t.

This type of thinking only stops us from getting the things we need to do and be better.

And I... I'm all about the better.

Being in control and present in our own lives, so we can create the reality we haven’t yet dared to even dream of.

Understanding and embracing this one fact - our minds don’t have to be our enemy. In fact, they can be our greatest assets.