I Have Chronic Pain, But I’m Still Allowed To Have A Life

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‘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. ♡

The Pain Corner does not make any profit. If you enjoyed reading my blog, or found it useful and would like to make a donation of £3 towards the cost of the domain, you can do so by clicking here. Your contribution will help keep this website running. Thank you!

Trigeminal Neuralgia

13 Comments Leave a comment

  1. Hi Kirsten, I believe that you are in great pain. I believe that it is very hard for you to wake up in the morning and carry on. I have trigeminal neuropathy, and I am in constant pain too, so maybe I understand a wee bit of what you are going through. I just want to say that your website has been a HUGE inspiration to me. You are strong to endure such pain. Just like how you have found a great man, I have a girl who I want to marry, and I was about to give up before, but I am working hard so that she will have enough confidence in me to spend her life with me despite my pain. I support your journey. We cannot let this pain beat us. Fighting!

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  2. Thanks for this post . It resonates .. I think no one has said yet but looking at how I live my life many people around me wonder “what pain is she talking about ?” I know because of the body language and the lack of interest when I talk about it .
    Guess what … it doesn’t matter . I want to live my life as normal as possible . There are some down days when I get dragged down to play the blame game ( dental work caused mine ) or when I get lost in the clouds of fear of an oncoming flare but most of the times I’m Ok .

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  3. Thanks for sharing this. My mantra is: I own my pain; it doesn’t own me.
    Sure, I don’t look like I have a chronic illness.
    I get up, get dressed, and face the day — even when I’d rather be in bed with a heating pad.
    I try and live my life despite my pain. Sometimes it dictates the rules; sometimes I step out of those boundaries.
    Some days I complain, whine and moan. But I’m allowed to.
    You are an inspiration to folks living with TN or any chronic pain condition.

    Liked by 1 person

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