People do notice things about those of us with chronic illness but they may not know it is because of chronic illness. Maybe they think we are socially awkward, nervous, or extremely absent-minded. Or they may know we have a chronic illness and not attribute these traits to it. But most of all these things make us stand out socially from other people.
All these are the ways in which I stand out with socially different behaviors. Things people notice. We have invisible illnesses but we definitely have things people can notice.
Pajama Day and our house may be less than perfect
Yeah, PJs are comfortable when you don’t leave the house due to pain and illness. Sometimes it is just because we are fatigued and the effort to get dressed is too much. Sometimes it is the fact that we are in pain and restrictive clothing is just too much for us. I tend to get dressed on most days into ‘comfort’ clothes instead. I feel ‘dressed’ but they are usually a few sizes too big and therefore do not bother my pain, including the burning skin pain, and no bra, of course. And not jeans. This makes me feel ‘productive’ to meet the day. It is a psychological thing I started to do when I was having issues with motivation due to depression. Nevertheless, comfort and clothing are difficult with pain and illness and in our own home, we are going to seek comfort over fashion. Frankly, I don’t care who comes to the door and sees me like that.
And when we invite people over, because this is easier than going out, they might note our houses are ‘lived in’ rather than pristine. It is exhausting to maintain a house with chronic illness. So bit by bit is the best policy and always pacing. So what? It doesn’t have to be Perfect all the time.
Brain foggy conversation
Due to brain fog, we can have a horrible time with conversations sometimes. We have troubles finding our words. We may trail off trying to find a thought. And sometimes this leads to silences and ‘ums’. Not going to lie, I’ve had the worst job interviews this way. Oddly enough I didn’t get the job either. Weird. It is embarrassing. It is frustrating. And it makes us seem a little off the mark for sure.
Our off sense of humor
Yes, gallows humor. We can laugh or be sarcastic about our illness and it IS funny to us or others with chronic illness but it can puzzle those without. Why do you make jokes like that? When it isn’t something funny you go through? Because it is better to laugh than to cry, man. And I won’t stop anytime soon.
Chronic complaining accusation along with ‘You’re so negative.”
We actually do not complain much at all. We complain when it is worse than normal and we are having a hard time coping. It may seem like a lot to someone who doesn’t suffer a chronic illness or pain, but that is really, really relative. And our bad days are Bad Days. And this may come off as being ‘negative’ but again it isn’t. It is just reality. Frankly, I promote realism when it comes to illness. None of this false flaky puffy positivity. And not deep dark negativity spawned from despair. But just realistic thoughts. A Bad Day is a bad day and we cope with that in many ways. But we are permitted to mention it. Everyone has bad days. It is Worthy of comment.
We cannot sit still
This is very true for chronic pain, especially fibromyalgia, where it hurts to be in Any position for too long. So cross your legs, uncross them, pull one up, pull the other up… in an endless cycle of move the pain around. Also get up and move around if you can. Stretch if you can. It is endless. People notice these things. It is often mistaken for nerves.
We move slow
And this is something that is odd if your age doesn’t match your illness or you don’t use a mobility device. It Confuses people. They stare. They do not understand why you are moving so slowly. I had one guy honk at me crossing the street when I was severely flaring. Trust me, if I could have moved faster I would have. But mostly it is the Looks.
We don’t make definitive plans
We say ‘maybe’ a lot of plans. And we shall see. People like to know who is coming to events in order to be prepared for them and all we can offer them is a ‘we will see you when we see you and if not then some other time’. But making a plan and canceling feels a lot worse.
We can be really absent-minded
Due to fatigue, pain, brain fog, we can have some pretty major issues with long-term and short-term memory. I’ve lost my car in parking lots. Forgotten customer’s names and their faces. Forgotten my address and my phone number. Forgotten policy changes at work. My spouse has to remind me of things that happened. Or people that were at events that happened. I have a difficult time thinking through pain and it Shows. It really shows. The mistakes I make at work are so not funny. I swear people think I am a moron sometimes just because I am trying to function with a migraine.
But what do you ‘do’?
A very common question when you meet someone is ‘so what do you do for a living?’ And sometimes we are disabled by our illness and flounder for a response to this. Do we mention we have a chronic illness? Or does that lead to judgment and false sympathy? What do we say if not? Cat-sitter? Domestic Engineer? It is definitely something people notice no matter how you answer. And, yeah, judge your character on it.
I actually am absent-minded even aside from the pain, fatigue, and brain fog. So imagine how bad that gets! We are going to do things that are going to stand out. It is a given. I loathe bringing my cane places because it makes me stand out. But in many ways I already do. Yes, my illnesses are utterly invisible. You cannot see them. You cannot tell I am in pain. I hide it exceptionally well. But all of these things are little ‘tells’. We all have them. Hell, with migraines my preference for hats and sunglasses is a pretty good tell given I’ll wear those sunglasses indoors as well. Or with IBS-D my 101 trips to the bathroom, which is often mistaken for the stomach flu is definitely noticed.
People can make assumptions about the sort of person we are sometimes based on some of these traits. First impressions do matter. It can lead to some judgments about our character. And that can be a real frustration we have to endure.