Answering 'How are you?' when you have a variable disability

This blog is about the times when I want or need the other person to understand my condition - it's not about the polite non-questions society asks but doesn't really want the answer to.

I have PoTS and hypermobility - between them causing a huge range of variable, potentially disabling symptoms, including pain or instability in any joints, issues with digestion and swallowing, fatigue, brain fog, heart rate, coordination and speech. And probably more.

For me, the "How are you?" questions from people whom I want to understand me, fall into 3 main categories: Glaringly obvious/With context/Without context.

Glaringly Obvious (to me)

This is when at the time of the question I have one symptom (and only one) that is massively impacting me, and drowning out the other symptoms. Perhaps severe pain in one area. Or really struggling with my heart rate. Or really struggling to speak. Other symptoms are minor in comparison, so my reply will relate to that one symptom. For example "My SIJ is being a nightmare, but otherwise OK" Or I might have the relevant keyring card to hand already (like one about being currently non-verbal) 

card with plain blue border and stickman with mouth covered by tape. text "I am currently non verbal. I can understand - I just can't speak. I may respond with a gesture instead. I will speak when I am able to. The most helpful thing you can do is let me be involved without trying to make me talk.

With context

This is where I will be interacting with someone in a specific way. Then my answer will relate only to the specific symptoms that will impact our interaction.

For example:

If I'm doing a seminar/webinar - I'll answer based on my speech and concentration ability.

If we're going to be going out for a meal - I'll answer based on speech and swallowing issues.

If we're going shopping - I'll answer based on my self propelling capacity, and decision making ability.

If we're going to sit through a program/movie - I'll answer based on my current sitting capacity/fidget needs.

These answers will often mix symptoms with assistance that might be needed. For example "My arms are doing pretty well, but I might need a hand up steep slopes. And my decisions are going to be slow cos I'm a bit foggy".

Without context

Top half or a puzzled womans face, with lots of wiggly arrows coming out of her head in a mess.
This is where there is no specific purpose to our interaction, and I have no one symptom that is swamping the rest (i.e. glaringly obvious) - just a big mix of dozens of symptoms, any of which could become relevant depending on what I do.

In these situations the context is too broad. I can't reply with relevant symptoms and needs because the possible scenarios that might arise are too varied. Anything could be relevant.

My brain will start to plan an answer, and scroll through current symptoms, get overwhelmed by the complexity and shut down. Like so there are no words in my head to answer with. It's just noped-out. The only responses I can give are then a noise (sometimes a single word) and a gesture. 

Fortunately a handful of close friends understand me well enough to interpret these well. But many people don't. 

So they think I'm refusing to communicate or being sulky or not recognising that they genuinely care. And I understand that. It can mean that I give better information to a stranger at a webinar than to a friend I meet after church. That's not a measure of whether I want them to understand or whether I appreciate their care - it's about my ability to process the data and form an answer.

With luck, after I've responded with noise/shrug, my brain will release enough to pick a pre-prepared answer off the shelf. Things like "Well, I'm here, so that's good" or "pretty close to my limits, but it should be ok". 

And then leave it at that until a situation arises that has context. And then I can give them the 'relevant info' answer that the context enables.

So if I give you a grunt for an answer, it doesn't mean I don't want you to understand: It means that at that moment, in that lack of context, I literally can't give you a proper reply.