Like many who suffer from invisible, chronic illnesses, I wear a ‘I’m fine’ mask. On the outside, it looks like I’m fine, and if you ask me ‘how are you?’ the most likely response you get is I’m fine. But what you don’t see 99.99%of the time is what is happening behind the mask. The phrase never judge a book by its cover springs to mind and it is very true, don’t judge a person on what you see on the outside, you don’t know what they are battling within.
Living with a mental health problem and chronic pain, especially CRPS, does take a massive, massive toll on me – both physically and mentally. I feel like I am in limbo. I want to be free, independent. But at the same time I need that help close by. I am most definitely a spoonie – a term taken from the Spoon Theory by Christine Miserandino. Link
Below are some of what perceptions are made by others when they see me ‘wearing’ my mask and what is going on behind the scenes as it were, behind the mask.
Outside the mask
Lazy
Bone idle
Can’t be bothered
Won’t get out of bed
Doesn’t help at home
Only cares about herself, doesn’t care about others
Doesn’t clear up after herself
Behind the mask
Exhaustion – mental and physical
Physical pain
The time spent wishing I could go back to the me I was years ago, knowing I cannot go back.
The urge, the desperation to do more
Depressed
Lack of energy
Working out if I have enough spoons to go out.
A person who feels like others don’t believe I am disabled. It is not all in my head.
A person crying because some people only see what is happening outside the mask.
I don’t often let my mask slip, but when I do it crashes, smashing to the floor. Being made to feel like crap just for not clearing my plate properly. I was only just able to clear my waste into the food recycling, my pain was in orbit and my mood was low – I was physically not able to do more. It’s hard enough feeling bad, but when others you live with just see outside the mask and don’t think of what is going on behind.
Here are some tips/advice/suggestions on how to help a person who wears a mask:
Just because they spent the day in bed or on the sofa - DOES NOT mean they are lazy.
Just because some basic chores (like washing up) haven’t been done – DOES NOT mean they don’t want to help at home.
Just because they were able to do something yesterday and not today – DOES NOT mean they didn’t enjoy it.
DON’T ASSUME they’re going to say no to going out (such as going out to the shops, a day trip or a meal) just because they said no the last time.
Take the time to learn about the medical condition(s) the person has. Ask the person, look on Facebook for support groups, look on sites like Amazon for books about the conditions. Although be careful of Dr Google. There are some incredibly useful sites out there with information, but there’s also the bad ones.
So, what to say next. Ummm
Apart from my fingers wanting to type mast instead of mask throughout
