Living Better: Life Lessons Of A Spoonie


I’ve learned a lot of helpful things in life, like don’t touch the hot pot on the stove and don’t stick forks into electrical outlets. (Yes, I learned those both first hand, and no, I probably won’t share those stories. I was a kid, after all.)

Probably the greatest life lessons have been in the few years since I got sick. There’s not much like having your life turned upside down to help you see things more clearly. Certainly, I didn’t learn everything overnight or all at once. Each lesson has come through trial and error, some pain, some loss, happiness, immense effort, and all the usual emotions that accompany the big lightbulb-over-your-head moments. Because I’m kind and generous and extremely humble, I thought I would share some of these great lessons with you.

Things I’ve Learned Since I Became A Spoonie

*It is not a competition. Pain hurts, yo. And it sucks rocks to be sick. But it’s not about who has what illness and how far progressed it may be. What might be a level four on that stupid pain scale for me, is maybe a two for someone else, and yet an eight for another. It’s not about comparing your husband’s cold to what a day in the life of you is like. It’s recognizing that we all battle something, and we’re in this together, not against each other.

*Find your tribe. There will always be people who don’t understand. Always. So it’s important to make sure you have a good support system to turn to. Whether it’s friends who you’ve known since you were in diapers, or your significant other, or family, or an online community, or any combination there of, find who you can turn to on those days when it’s just really hard. Knowing ahead of time who will answer your call in the middle of the night when the pain is keeping you awake and you just can’t stop thinking is a powerful tool.

*Be gentle with yourself. I know I say this often, but it’s probably the most important lesson. And I’m still learning it, over and over again. It’s hard to reconcile our new selves with the previous picture we all had in our heads of who we would be. We often continue to hold ourselves to the old standards, even though we know they’re no longer feasible. I’m in no way saying to give up on yourself, but be kind in your criticism. Remember that it takes energy to heal, and even if the house looks like a tornado has blown through it, you got up and LIVED today, and that is an accomplishment.

*Cut out toxicity. While stress doesn’t cause our illnesses, it can trigger flare ups. When we’re already fighting so hard to live, don’t you think we should try to make it as easy as possible for ourselves? Obviously the bills and chores will always be there, but there are stressors you can cut out. Let go of, or reduce contact with anyone who isn’t supportive. Cut out social outings that always cause you tension or anxiety. And if you’re struggling seeing where you can make some positive changes, sit down with someone you trust and ask them for their honest opinion. Often they see what we’ve become blind to over the years.

*Learn to accept help. And how to ask for it. Another thing I’m still learning on the daily. But truly, our loved ones WANT to help us. And there are certainly times we can use it. So why do we let our pride get in the way? Tell that pesky pride to shut its mouth, and accept the offer from the bag boy for help loading groceries into the car. Smile and nod when a friend offers to have your kids over for a play date and take the opportunity to nap. Most importantly, learn how to express to your loved ones when you’ve hit your limit, or when you’re close to it. Learn how to communicate what you need, even if it’s as simple as someone fetching your heating pad for you so you can just lay still as you feel a flare up coming. Trust me, they WANT to help you.

*Find joy wherever you can. This may be the most important thing I’ve learned. With a life now overwhelmed with medications, symptoms, the depression that often accompanies chronic illness, doctor appointments, and pain, it’s crucial to find joy and happiness. Smile as the cool fall breeze flutters through your hair. Stop and smell the roses. Pick up a box of crayons and remember what it’s like to be a kid again. Play your music loudly and sing along, not caring who hears you. Get excited about new fuzzy slippers and cute pajamas. Facetime or video chat with loved ones far away so you can see their smiles, even if you can’t be with them. Soak up every single ounce of happiness. It will balance out all the yuck, and from my experience, that’s worth more than all of Midas’ gold.

I hope these life lessons can help you to live better. Life may have it’s obstacles, but it doesn’t have to be so damn difficult. Embrace the fact that you are still LIVING and find ways to make life work for you. You’ll be amazed at how much better you’ll feel.

20 thoughts on “Living Better: Life Lessons Of A Spoonie

  1. I think those last three really ring true with me for anxiety. Toxicity, asking for help.. finding joy. It all helps. And I don’t know much about physical pain, but I can almost imagine. Almost.
    You’re a warrior.

    1. Tamara- You are too kind. I’ll be honest, the first 6-9 months after my diagnosis were the hardest. I wanted to give up, the pain was just too much. But I had a very sweet lady reach out to me and show me that giving up should never be an option, and that it is possible to still live a kick-ass life in spite of chronic pain. I use that in regards to my depression and anxiety as well- Giving up is NEVER an option. I have too much life left to live ā¤

  2. This just popped up as a related post to your comfort gifts for spoonies posts and I am glad I read it. It’s critical. So important to think of all of these things. I’m glad you wrote this post and totally sharing it later today.

  3. Absolutely true and absolutely beautiful post. It takes tremendous effort (though it probably shouldn’t) to recognize that each moment is precious, and it’s all we have. I wish in some way this came easier to us, as everywhere we see people who are unhappy or unsatisfied. Great post, Tia, I’ll definitely be back for a second helping šŸ™‚

  4. Great lessons/list! For me, the hardest is toxicity. Especially around the holidays. I feel like I’m a “bad” person if I don’t go do “time” with extended family members who truly act like they don’t really care if I’m there or not. I don’t want to go, but feel I should. Yuck. Happy SITS day!

    1. Thank you Jean! Toxicity is also where I struggle, especially around this time of year. I also feel the guilt. I’ll just tell you what I try to keep telling myself: We have to be kind to ourselves. So let yourself off the hook šŸ™‚

  5. You have a great attitude. I so agree on the looking for joy and eliminating toxicity as best we can. We are only given one life and it is a beautiful gift!

    1. Thank you so much Raquel! I’ll be honest, there are some days I don’t have a great attitude, but I think that’s natural. For the most part, I try to stay on the upbeat side of things. It might not make the pain go away, but it can make it more bearable.

  6. Really wonderful and wise post. I agree completely that our lives and struggles are not a competition. It is not who has it worse or better. We’ve all got something. I also totally agree about toxicity. Sometimes this can included people. Some people in our lives are not a support and therefore do not deserve a spot. Thank you for sharing with grace and honesty.

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