I live with pain every day. It’s part of me, but not all of me. It shapes my life, but it doesn’t define me.
Pain Is a Thief
Pain can be overwhelming. It can take over thoughts, feelings, and every part of daily life. Often, it feels as though it comes along like a thief in the night, stealing our lives. It creeps into the deepest crevices of our beings, then wears us down until there is virtually nothing left.
When that happens, it’s easy to lose sight of who we are beyond the pain.
But, beneath the pain, the illness, the struggle — we are still ourselves. We have qualities, interests, and passions that remain untouched by what our bodies endure.
My Own Story
Pain is constant in my life—it is part of me – but it’s most definitely not the whole story.
I live with trigeminal neuralgia, scoliosis, chronic back and rib pain, as well as Raynaud’s, osteoporosis and coeliac disease. My pain prevents me from working, but that has given me time to focus on other things.
One of the most meaningful has been creating the End Trigeminal Neuralgia awareness page and support group to provide free, accurate information for others living with TN.
I also find joy in simple things — books, music, conversations and laughter. These remind me that I am more than what hurts.
Over the years, I’ve tried my hand at various hobbies and crafts. Pain is demanding and controlling but I don’t want it to stop me from doing everything I enjoy. I look for easier ways of doing things and learned to ask for help so that I don’t miss out on doing something I love.
I’ve cross-stitched, made tapestries, embroidered, made jewellery and crafted handmade cards. I went to an art class a few years after having to take ill-health retirement and discovered a new and unexpected love of drawing and painting.
And of course, I love to write. As well as this blog, I’ve also written fiction and poetry.
My Pain Doesn’t Stop Me from Being Me
Of course, it stops me from doing many things, but it doesn’t stop me from being me.
I am still a compassionate person who can listen to other people’s problems with empathy and understanding. I still have patience, despite my pain. I still have an interest in what’s going on in the world and get angry and upset at inequality and discrimination.
I like to help people when I can, and I’m honest, trustworthy and considerate. I try to be positive, and I am nearly always that glass-half-full person.
You Are Not Your Pain
Pain may be part of your life too, but it is not who you are. You are still you.
If you’ve forgotten who you are, it’s time to remind yourself that you’re not just someone living in pain. It’s time to remind yourself that there’s more to you.
Ask yourself:
What qualities make me me?
What makes me happy?
Who do I love?
What do I enjoy doing?
If you can, write down your answers. Keep a list of the things that matter most to you. When pain feels like it’s taking over, look at that list. It’s proof that you are still there.
These questions aren’t vain or self-indulgent. They’re reminders of your identity beyond illness.
Don’t Let Pain Overshadow Who You Are
If you pause and look, I hope you discover that you are still there. You exist beyond the hurt.
Don’t let pain erase your essence.
Look in a mirror
Look at that face looking back at you.
Look into those eyes.
Look really deeply.
Try to look beyond the pain.
Keep looking and smile at your reflection.
See how your eyes change when you smile?
That’s the real you.
Did this post resonate with you? Do you feel as though you’ve lost part of yourself?
Let me know what you think in the comments.
~~~
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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Despite the pain we live with, we need to try to hold on to who we really are.
This was really powerful – I think sending that encouragement to yourself is beautiful and very necessary. You are more than what you feel at the current moment.
-Nkem
http://www.nkemistry.love
Thank you so much Nkem. I appreciate your comment
I found hot water I mean to the put of scouring the skin on top of the head and neck area. Letting your sinuses run and clearing them out over and over tell most of the mucous is gone gives a little relief, when it’s almost unbearable with no ways of relief. I found that a antibiotic with carbmazepin 200 mg. The dosage as needed, has given me almost nonexistent pain. Remember this was caused by a wound by extrication or a needle or whatever damage to a nerve. So in my case and that’s the case I know intimately as nobody has any real idea of this affliction other then those whom are living it. Nobody I mean no doctor, unless he has it even understands the relentless pain and despair it can create. My cocktail I describe to you is my blessing and hopefully every person that try’s it, there’s. Also I believe with what I take the antibiotic is imperative. Remember some form of trauma put this in motion. Also if it matters one day is overwhelming or a instance of one attack is enough to never be forgotten. I have over 4 years of this, the words I want to use are cuss words and negative words but I don’t want to use that I’m trying to help not hinder. I’m sure we all at some time have let the words fly and damed god and existence. I stumbled onto something or was blessed and hopefully for no relapse and hopefully help for one and all that is suffering with this life changing I guess I’ll call it “a injury”
Thanks Steve, I am glad you found something to help you. Hope it continues that way.
Potent reminder of how easy it is to lose yourself in the pain. These are great suggestions to combat that.
Thank you Trish. It is very easy, so we need to make the effort.
This is exactly What i’m trying to teach myself, I am not my pain. I am Kiki, hi! It’s Nice to meet you ?
Nice to meet you too, Kiki! You’re definitely not your pain. There’s a lot of learning to do when you live with chronic pain. Hope to see you again 🙂
I am not the same since TN and Facial Pain got it when i was 20 and Now 40 . I feel after some reflection and self helf that it is my Toughest life challenge that i battle with every day. It tryed to define me but i fought back and refuse to let it. I attend my hospital help group to let people just diagnosed know there not alone and that they are stronger than they realise. Its not easy by no means but one day at a time.
Without a doubt, it’s not easy, Essie, and all we can do is take it one day at a time. Every day can be different and bring something new to the table. But we try. I’m glad your hospital group is helping.
Oh, my! I was explaining TN to my new family (daughter’s boyfriend’s parents and extended family) at Thanksgiving yesterday. I was telling them this exact thing, and how I wish I had the words to encourage those in the support groups who often do not seem to have any hope or “bright side.” Thank you so much for this! Yes, we live with this pain every single day, but we also get a chance to live and love! Mine is bilateral, with a failed mvd on the right, and a recent mvd on the left with minimal results. Anesthesia delorosa to boot!Three children and left for someone another woman. Life isn’t easy, but it is a gift I cherish each and every day!!! Thank you again for your words of encouragement to all! ? Much love and many blessings to you!
Thanks for your lovely comment, Allison. You’re exactly right, we should cherish each and every day. It’s definitely not easy, but somehow, if we work at it, we can get through it.
Sorry, forgot my name!
I´m not my pain either.. fuck anxiety!! Big hug to you!
Thanks Jennifer
Pain can be so all-encompassing and overwhelming, that it creeps into who we are, and yet we’re more than that. Such a wonderful reminder, brilliant post!!
Caz xx
Thank you Caz, yes we are all so much more.
I am so glad you decided to share one of your brilliant poems Elizabeth and combined it with self-care. I agree we are not our pain but it just a bit part of our lives and I use questions like yours daily to remind myself I can be more than a chronic illness ?
Thank you. Yes, you are more than your chronic illness, Morgan. Much, much more.
Had to come back and read this again today, Elizabeth, as having a really rough day…..need to remind myself I am NOT my pain…aghhhhhh, Claire x
Hi Claire, so sorry that you are having such a rough day. Sometimes I need to read it too! I hope you feel a bit better soon. Take care x
It’s so important to hold onto who we are and to remember that the symptoms do not define us. They’re part of what we experience in life, but they’re definitely not who we are.
It did resonate with me so much, so much so I have pulled your questions out to write a post about, thanks Liz of course I will link you x
Oh, Rachael, I am glad it resonated with you.
I will look forward to reading your post ?
I don’t struggle regularly with debilitating pain, however this totally relates to how my disability affects me. The things it has taken from me, the way I have to adapt and focus on the things I can do. I may not do everything I dream, or do everything myself, however what I can do I put my all in. Focus changes.