A Mystery Disease


I spent my teenage years with a mystery disease. From age thirteen to seventeen I went in and out of doctor’s offices insisting to various doctors that I generally didn’t feel good. I was tired. I was sore. I wanted to sleep all day. I was low grade nauseous a lot. I just didn’t feel good. It was hard and confusing and when the doctor couldn’t find anything wrong with my gut, my muscles, my thyroid, or whatever else they were testing for, they would tell my mother it must be in my head.

I wasn’t really sick if they didn’t know why. I needed to get over it. I needed to move on. I needed to act according to their expectations instead of my reality.

You may not be surprised to know I still don’t love doctors. They make me nervous and I am not always sure they will hear or believe the experience I am having in my own body. Yes I needed answers, but more I needed people with power to believe me. I still don’t like the smell of hospitals and doctors’ offices. It makes me feel out of control.

Triggers are funny like that. They don’t always make sense, and they sometimes surprise you. You don’t always know your own so it is impossible to know anyone else’s.

I have had a rough couple of weeks. I am just. So. Tired. Things that shouldn’t be hard are hard. Things that I roll my eyes for other people complaining about, I am suddenly realizing that maybe they weren’t whining. Maybe these things ARE really hard they just were not hard for me … yet. Turns out I needed to be more gentle with my colleagues. When they told me they were triggered and I wasn’t, I decided it was because they are soft. They just don’t know how to get it together. That wasn’t true. That was me being a jerk.

And then those very same things triggered me! Things that weren’t bothering me suddenly really were. And because I didn’t believe or take seriously my colleagues’ pain, it was really hard to take seriously that same pain in myself.

When I was struggling with my mystery disease I had pressure points that hurt for seemingly no reason. Sometimes playful pokes and well meaning hugs hit me in the wrong way and caused pain, even when the toucher meant no harm. Just because they didn’t mean anything by it doesn’t mean I was not in pain. Just because I wasn’t feeling the effects of the things my colleagues were struggling with didn’t mean their pain was any less real.

Here is the thing about pain, trauma, struggles, grief: only the person experiencing it gets to tell us whether or not it is real. Just because me punching your shoulder feels fine doesn’t mean it doesn’t hurt like hell for the next person. We cannot ever really know when a person is in pain, instead we need to believe them.

And what I have recently discovered is that the person whose pain it is often hardest to believe is my own. If I had practiced empathy for others as they were expressing what triggered difficulty in their life I likely could have been more gentle with myself. Their pain was real. My pain is real, but I hadn’t given myself permission to recognize it in either of us.

Triggers are strange. They don’t elicit the same experience from one person to another. That doesn’t mean we should judge one another’s pain as valid or not. It means we need to believe each other. Be kind to each other. Practice being gentle with all of us, even ourselves.