‘You wear make up’
‘You complain that your glasses irritate your facial pain, but you still wear them’
‘Your pain mustn’t be as bad as mine’
‘You mix painkillers and alcohol’
‘You still manage to work’
‘You haven’t had surgery’
I hear it all.
I have trigeminal neuralgia and I’m allowed to have a life.
There is an assumption that once you get diagnosed with chronic pain, your life is automatically over. I wrote recently about my condition being called the suicide disease. I’ve also written about why your pain is worse than mine.
Every time I write about anything positive in my life, I get at least one comment on the website, or social media, kindly pointing out that I must not truly be in pain. If I’m happy, my health isn’t that bad.
I’m a woman in my late twenties. I haven’t had more than a cheeky little lick of icecream (followed by instant regret!) in five years, at the time of writing this. If I want to go for a normal after work drink with some friends, it has to be on a ‘low pain’ day, when my fatigue isn’t so bad that I could fall asleep at any moment – which isn’t very often. My nights out with friends actually always end with me in bed at 9pm, after a couple of drinks. I have to ask the barman for room temperature drinks & sometimes I will sip on a cocktail, because I just want to feel normal again. I work, because I do an important job and I will keep working until I physically can’t anymore. I’m very privileged to still have the small amount of energy to work, but it means all my ‘free time’ is spent sleeping, because there is only so much I can manage. That is my life and I will cling onto the happy, normal, fun moments, because otherwise what else have I got?
If I could give only two pieces of advice, they would be:
- You are allowed to be in pain and have a good day.
- Having a good day definitely doesn’t mean you can’t complain about your bad days. ♡