How to live a fulfilling life, even when you’re in pain

 

Zoe Simmons gives some helpful tips on how to stay connected to life when living with chronic pain.

Life is challenging enough, without the added complications of living with chronic pain.

Chronic pain can be absolutely crippling, affecting your body and mind in ways you couldn’t understand unless you too have experienced it. But even when you’re in pain, life doesn’t stop. You still need to do all the things an able-bodied person does, only it’s harder.

I am 25 and have been living with almost daily pain for three years now. It is so incredibly frustrating and exhausting—but even though it impacts me so much, I don’t want it to stop me from living a good life.

So, how do you do it? How do you live a good, fulfilling life, even when you’re in pain? I’ll admit, I don’t have all the answers. I’m still learning, too. But I hope by sharing my experiences, I can help.

Treat yourself with love and compassion. Always.

This is something I struggle with a lot. I often beat myself up about my condition—more than anyone else ever could. I feel like I let myself down, and those around me, because there’s so much I want to do and even more things that I can’t. It’s frustrating. Depressing. Disheartening.

No amount of self-hatred can change this. Self-love, on the other hand, can. Love yourself through the pain, the fatigue, and the challenges. Love yourself even when it’s hard. Even when it feels like your body’s betrayed you (it hasn’t). Challenge the self-depreciating thoughts you have. They usually stem from societal expectations that don’t understand what it’s like to not be able-bodied.

You are INCREDIBLE. You are STRONG—stronger than anyone around you probably realises. You’re doing your best and that is more than enough. YOU are enough. Remember that.

Make things as easy as possible.

The reality of existing in chronic pain—or with any kind of disability—is that things will be a little different for you: and that’s okay. In fact, it’s more than okay.

One in five Australians live with a disability, yet our society and its expectations are still so ableist. It’s ingrained in us, too. But here’s the thing; it’s okay to do things differently, and it’s okay to have different needs.
Whether that’s hiring a cleaner, getting meals and groceries delivered, bulk cooking, mobility or accessibility aids, medication, needing more rest or saying no to things that drain you, it’s okay. Give yourself permission to let go of society’s expectations and live how YOU need to, even if others don’t understand.

Connect with your community.

Being in pain can be such a lonely road, especially if the people around you don’t experience it—and can never really, truly understand. For me, connecting with other people with disability online has been a godsend. We can share our sorrows, our fears, our challenges, our wins, and feel like we’re a little less alone. It’s done wonders for my mental health and has really helped me to cope with accepting my condition, and all the grief that goes along with it.

As a journalist I’m often interviewing people with chronic pain and disability (usually endometriosis), and it’s taught me that a lot of our struggles are similar. It’s also taught me the power of connecting with others who have a similar lived experience and how, even online, your community can help you feel so supported and empowered to keep going—even when you don’t want to.

Connect with your community whether that’s reading stories, interacting on #DisabilityTwitter, or joining Facebook groups. Talking to others helps me validate my own emotions and experiences, and serves as a reminder that no matter what, we can get through this and we are not alone.
Talk to the people around you.

While we might struggle, the people around us won’t know that unless we tell them. For us it’s obvious, but for them it’s not. So, tell the people around you what you need. Tell them how you feel, what you experience, how they can support you, and anything they can do to help make life easier for you.
I know this can take a lot of spoons, so it’s perfectly okay to direct your loved ones to existing resources online to learn about your condition. Ask them to research, and share as much as you feel comfortable with them when you have the desire and capacity.

The people around me now know I struggle to do certain things, like standing or walking for too long. They know that my pain can hit me out of the blue with great intensity. They understand and support me as best they can. And honestly, it makes life so much easier.
Remember the little things.

Maybe I’m not ever going to be able to climb a mountain, but I can feel and experience the small joys of existing—like the smell of fragrant flowers, the soothing sound of rain hitting my roof, and the feeling of warm sunlight kissing my face.

We can often get caught up in our minds, and all the things we’re not doing. I want to challenge you to focus on the things you are doing (and experiencing). Every night I make sure to list all the things I did or experienced that I’m grateful for. It doesn’t have to be anything big. Sometimes it’s that I got to pat a particularly cute dog, or that I did my stretches, drank water, ate food, or treated myself to a glorious bath. That’s not to say there won’t be bad things too, but I think it’s incredibly important to celebrate the little things, and the small wins.

Celebrate your differences.

I can think of a million reasons why I don’t like chronic pain, fatigue, and how it impacts my body. Instead, I like to think of the positives—and not in a forced toxic positivity way, either. Yes, I have chronic pain — but I also have really valuable insight into what it’s like to live with a disability. I can educate the world about my experiences. I can advocate for change. I can connect deeply with others who have similar experiences—and that is a genuinely beautiful thing.

Share your story.

The more we share our stories, the more we are heard. And the more we are heard, the more we can create change. So share your story (if you want to), because you never know when your story might become someone else’s survival guide.

I’m in pain but I like to hope that because I live and speak out about what I experience, I can help someone else breathe easier. Or at the very least, help another human feel seen and heard. And if that’s not living a fulfilling life, I don’t know what is.

Spoon Theory

Developed by Christine Miserandino, Spoon Theory is a way of explaining units of energy when going about daily tasks for people who don’t understand disability. Every person starts out with their different numbers of spoons, and as each task is completed some of the spoons are removed until you don’t have enough spoons to complete whatever else you want to do. You have to allocate your spoons wisely!

 

spoon for living in pain

Charmaine Idris is a paraplegic who self-manages her NDIS funding. Her lived experiences as a paraplegic (23 years) has given her the insight and opportunity to pursue her dream of being an advocate and peer support leader with peak non-profit organisation Queenslanders with Disability Network (QDN) where she has significantly contributed to matters relating people with disabilities (PWD) across a range of important topics that include housing, employment and the NDIS rollout. Working closely with the University of Sydney and with her fellow PWDs, Charmaine has made a valuable contribution in setting up Disability Inclusive Disaster Risk Reduction in Australia (DIDRR Australia). Charmaine believes that her spinal cord injury does not define her lifestyle.

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