We had a friend stay recently, for two nights.
It was VERY hard on me.
Dealing with pain, & trying to hide it, around a stranger to the house (I’ve known this person for years, but I’m not comfortable around anyone but my partner) is hell. Fighting fatigue & pushing my body waaay past it’s limits, for two days in a row, is soul destroying. Feeling the toll that leaving the house for a few hours has on your body, & seeing how easily other people take it in their stride & how they don’t realise the effect it’s had on you, is upsetting.
It’s just hard.
Healthy people take so much for granted, which is normal…but it causes problems when I’m feeling very ill, & they can’t empathise or imagine what it’s like.
It’s SO HARD to get people to understand what a life with disability/chronic illness is like.
You are dealing with symptoms & pain 24/7. Your conditions are always a hundred times worse on the inside than what other people see on the outside.
Seizures are not just ‘spacing out’ for a minute; they’re feeling lost, not being able to think straight, feeling anxious & exhausted.
POTS bringing my heart rate to 170 when I stand isn’t ‘just’ a high heart rate; it’s struggling to breathe, feeling dizzy, feeling nauseous, feeling weak, having seizures.
A migraine isn’t just a headache; it’s immense pain that triples everytime you move, & light or sound is like a knife in your head.
Subluxed joints aren’t just ‘oops a joint popped out!’; it’s a lot of pain, anxiety, and fear of when the next will happen – it’s loose joints throbbing & aching all day long.
I look fine on the outside, so it’s hard for my friends & family to understand how badly I feel, all the time. I put on a front, I hide the pain. I try so hard to get to enjoy the odd day out, & then I pay for it viciously afterwards…I had two migraines in the three days our friend was here, & yesterday (the day after he’d left) I was in bed all day due to extreme pain & fatigue. Today I’m struggling too.
It’s hard feeling like nobody understands you, alongside fighting doctors & constantly having to prove how sick you are.
It would nice just to be believed & supported.