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Invisible Illness: When the Outside Doesn’t Match the Inside

Would You Rather Have an Invisible or Visible Illness?

Invisible Illness Week came to a close last night and I wanted to share some thoughts. During the week I saw a lot of people talking about whether they’d prefer an invisible illness or a visible one and of course how there are advantages and disadvantages to both. Some said:

I really wish my illness was visible because then people would really know what I go through.  

Gif from the movie Forest Gump that says "But you aint got no legs Lieutenant Dan"

But do you really want something visible like elephantiasis or herpes of the eye? Do you want to be in a wheelchair missing both of your legs just so people can SEE that you are suffering?  Probably not but I do understand where these feelings stem from. You want validation. When you say you are in pain or suffering you want people to believe you without them looking at you and assuming that you must be faking or over-exaggerating.

When the Outside Doesn't Match the Inside

I can’t tell you how many times I’ve returned to work after a hospital stay and I hear, “You look great, so glad you’re feeling better!” Some will ask me about a new medication I am on and they assume that it’s a fix-all. It’s difficult when the outside doesn’t match what is going on on the inside. But then I ask myself, why do I care? What does it matter if people don’t understand that I can look okay on the outside but I’m not doing well on the inside?

The only conclusion I can come to is that I want validation. I want people to know exactly what my Crohn’s or my CIPO can do because it’s upsetting when someone doesn’t understand how difficult it can be at times just to get through the day. I want to trust that I can say I am in pain and have people believe me and not assume I am exaggerating or faking.

Illustration of a person opening up their body cavity like it's curtains to expose bones

But then I ask myself, why do I care? What does it matter if people don’t understand that I can look okay on the outside but I’m not doing well on the inside?

Do I really want a visible illness? Nope. Perhaps it’s a blessing to have an invisible illness. No one needs to know you have an ostomy unless you lift up your shirt and show them. No one needs to know you’ve had a seton placed or that you are bleeding internally because they can’t see those things.

There definitely have been many times that I have been visibly sick but generally speaking most of the time no one would know unless they caught a glimpse of my central line or surgery scars or saw me on TPN

For the most part I’m glad that my health conditions are invisible. I’ve made it visible in my own life through this website and the work that I do as an advocate. It’s a personal decision to let people in, and I’ve chosen to make it visible in the healthiest way I know how. This past week was about that; It’s about bringing invisible illnesses to light so that there is more understanding in the world. 


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