When Your Invisible Illness Becomes Visible

Awareness about invisible illness is something that most of us who work in advocacy are incredibly passionate about. Those who live with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand.

Conditions like Addison’s, Cushing’s and most adrenal diseases cannot be seen by the human eye, but affect the lives of so many people.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse — looking well, but being sick, and therefore having people assume you are lazy and unmotivated? Or being sick and “looking sick,” while people stare at you in confusion – because they know something is wrong but don’t have the compassion to understand?

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my diagnosis of adrenal insufficiency.

My body now bears the exacerbation and side effects of poor steroid absorption. Before I was on the cortisol pump, I was on steroid tablets, which I did not absorb and became very sick.

My once clear skin now bears the unfortunate appearance of acne. My figure is now in double digits instead of the quaint size 8 I formerly was. My body bears the bright purple and red stretch marks and scars resulting from my surgery and the mismanaged cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my body feels like. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make-up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

But I’m able to realize that self-worth should never be dependent on looks. It is truly inner beauty that counts. How someone treats another person is the true reflection of who they are. Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

To me, true self-control is trying to control your thoughts, actions and feelings when nothing is the way you feel it should be. So when I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a person living with chronic illness can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.

Most of us living with a form of adrenal disease have struggled with our looks. Before my diagnosis, I was at a healthy weight for my height, and then four years later (before the pump), I ballooned to an obese size.

But you know what? My heart remains the same. The only size that should matter is the size of your heart and your ability to have compassion.

We have enough to battle — let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

If you are struggling with self-acceptance, please reach out to us at the Adrenal Alternatives Foundation for resources.

Follow this author’s journey here.