I have an autoimmune condition.

Previously, I had what I call the “health privilege.” Nothing about my health significantly impacted the way I lived.

While living with that privilege, I don’t know if I ever paid attention to the embodied experiences of those around me. Nothing in society ever prompted me to.

Despite this, everything changed when the symptoms appeared. It seemed my relationship with my body changed overnight. 

Since autoimmune conditions never disappear, there was no going back to the life I had before, even though many people expected me to. They thought I should act and function the same.

People looked at me and thought I was fine. Or, if they knew, they thought it would get better. 

But this is not how autoimmune conditions work. Those living with these conditions suffer in silence. They are not simple “take a pill and you will be okay in the morning” types of situations. 

People do not notice your behaviors because it’s occurring inside your body. They can’t “see” your pain, so they minimize or ignore it. Or, they do not care to know because it makes them uncomfortable. 

This produces a lot of grief. This grief comes from the diagnosis and thoughts about what should have been. There is also grief around the loss of relationships, as someone with these conditions may choose to walk away from unsupportive connections.

Socially, no one ever seems to acknowledge these facts. They are swept under the rug. 

It’s not spoken about. Many people live in silence regarding how their autoimmune conditions affect them.

Somehow, after a diagnosis, we are supposed to just “get over it.” 

The more I share my story, the more I find how many people can relate one way or another. I have learned people are living with chronic conditions that you will never know about.

From the outside, they look normal, or at least they try to. On the inside, it is a different experience, living in chronic pain, discomfort and constant worry, among a host of other sadnesses.

The physical pain associated with a diagnosis is just the beginning. But the emotional toll may be the most difficult.

I have received comments and questions from the people closest to me such as, “You look normal” or “Why are you sleeping all the time?” 

Many of us are constantly gaslit about our experiences: “It can’t be that bad.”

I often wondered where God is in the midst of all this. Then, I looked back at the Gospels. 

When Jesus came across someone who had a different embodied experience from him, he took the time to recognize their truth and humanity. He didn’t dismiss their reality, inserting his discomfort or thoughts over theirs. Christ somehow knew two realities could exist simultaneously, never overriding one another.

He reminded those with chronic conditions that they are not powerless or useless. 

True healing came not necessarily to the “problem” but to the embodied soul by restoring the “sick” person to their community.

Likewise, listening to others can help us develop encouragement skills and a ministry of presence. While we can never fix someone’s pain or alleviate it, we can be the voice to say, “I am here with you.” This demonstrates to those who are suffering that they are not alone. 

We all need to come to grips with the reality that we could lose our “health privilege” at any moment too, our bodies becoming strangers to what we once knew. This could leave us all with the proposition of creating a new normal.

Whether due to age or a condition, one day, everyone will need community because of something that has failed with their bodies. This should inform how we all approach those, like me, who are suffering in silence.