It's eight in the evening and they have gone quiet. They are sitting on the edge of the bed with the grey look you have learned to notice.
You ask what's wrong. Then you ask where it hurts, and whether it's like last time.
"I can't explain it right now," they say, and turn towards the wall. You stand there with your hand on the door, feeling shut out.
Why the words run out
Explaining is work. It is easy to miss that, because for most things it is light work.
In a diary study of eight people with POTS, participants called many of their symptoms invisible, indescribable and impossible to measure. They said this made it harder for other people to understand.
The researchers say that struggling to explain an experience makes being misunderstood hurt more.
Many people with POTS also have trouble concentrating. On a bad evening, finding the right words may be one job too many.
And there is history. In a study of 43 people with EDS, being doubted by clinicians had changed how people talked about their symptoms. Some had lost trust in their own ability to describe them.
That study was about doctors, not home. But a habit like that may follow a person through the front door.
So "I can't explain it right now" may have very little to do with you. They may have nothing left tonight, for a thing that never had good words.
What stings, and what some people find helps
A couple of lines tend to land badly:
- "What's wrong?" asked for the third time. The first one was care. By the third it can feel like a demand.
- "I can't help if you won't tell me." It turns their silence into something they are doing to you.
Other lines need nothing back. Some people find these easier. They won't suit everyone.
- "No words needed. I'll sit here for a bit." It stays without asking for anything.
- "Yes or no will do. Do you want the light off?" A nod is enough to answer it.
- "Tell me tomorrow, or never. Either is fine." It takes the deadline away.
Feeling shut out is allowed. You asked because you care. Wanting to know what is happening to someone you love is not nosiness.
Some people agree a shorthand on a good day: a number, or a single word, that means "bad, and I can't talk". Whether that would suit the two of you is a conversation for a better evening.
A closed door and an empty tank can look the same from the hallway. On a better day, you can ask which one it was.