It's Sunday lunch at your mother's. Your person has made it to the table, in a good shirt, laughing at the right moments. An aunt leans over and says, warmly, "You look so well."
Your person smiles and says thanks. You see the smile stop a little short.
In the car they go quiet. When you ask what's wrong they say "nothing". Ten minutes later they say, "Everyone thinks I'm fine now."
You were there, and all you heard was a compliment.
What the compliment didn't see
People with POTS often look well even when they are badly affected. That is how doctors have described it, writing for other doctors.
Because symptoms come and go, a person can seem fine for a stretch and still be struggling overall.
In one small study, eight people with POTS kept video diaries for 17 days. Being misunderstood by others was one of the main things they talked about. The researchers linked it to how little of the condition shows on the outside.
So think about what looking well at Sunday lunch may have taken. Perhaps a morning spent resting, so there would be something left for the afternoon. Perhaps the decision to spend tomorrow's energy today.
And lunch may not be the end of it. Specialists who write about fatigue in EDS describe "boom and bust" cycles. They say symptoms can increase for a few days.
From the outside, "you look so well" is a kind remark about one afternoon. From the inside it can sound like a verdict on the whole illness. If they are better now, next week's bad day will need explaining all over again.
What tends to sting, and what some people find helps
The aunt did nothing wrong. She saw someone she loves looking good and said so.
A couple of lines tend to land badly all the same:
- "You don't look sick." It is meant as reassurance, and it can be heard as doubt.
- "You must be feeling better." It leaves them two choices: agree, or correct you in front of everyone.
Other lines notice the person without closing the case. Some people find these easier to hear. They won't suit everyone, and some people would rather not have their health mentioned at lunch at all.
- "It's really good to see you." It is about them, and it says nothing about how they must feel.
- "I love that shirt." A compliment about a choice they made is only a compliment.
- "How has this week been?" It asks, and it leaves room for an honest answer.
For you, the person who drove them there, there is a quieter job. You may have a fair idea what today cost. You don't have to announce it to the table, and they may well hate it if you did.
What some people find helps is one sentence in the car. "That was a big effort today. I saw it."
It is all right if the silence in the car stung you too. You took them somewhere nice, someone was kind to them, and you still ended up feeling you had missed something. You hadn't done anything wrong, and neither had they.
Next time someone tells them they look well, you will know two things can be true at once. They do look well. And looking that way may have taken most of the day.