Fragile Fighter: Lara Bloom on Living with Ehlers-Danlos Syndrome
Have you ever noticed how people talk about sickness and health in terms of combat and warrior analogies? We’re battling chronic illness, beating depression or losing the fight to cancer.
In a way, that makes complete sense. When you’re in pain and exhausted to the bone, everyday living can really seem like a quest from a Tolkien novel. Something as simple as grocery shopping suddenly feels like an expedition to Mount Doom.
For many many years, I turned to heroic stories to fuel my motivation, to strive for recovery, to keep reaching for my dreams. And it worked. With the ‘help’ from Buffy, Sydney Bristow and G.I.Jane (I’m clearly a nineties girl), I passed my high school exams against all odds, despite not being able to attend classes. Epic journeys like Lord of the Rings pushed me to get fit and mobile enough to explore the world, while survivor stories from Chris Ryan and Bear Grylls inspired me to keep going.
Thanks to the warrior analogy, I achieved many meaningful goals that made a big difference to my life.
But now that I’ve learned so much more about the impact of your mind on your body, and how your nervous system works, I’m not so sure any more that the ‘spoonie warrior’ analogy is always the best choice.
You see, when your mind is in that ‘fight for your health’ mode, your body listens. Your brain stimulates the release of stress hormones like cortisol and adrenaline, your muscles tense up and your heart beats faster, getting you ready for the action your thoughts are expecting. This chain of reactions mobilizes your body’s resources to respond to the threats you’re facing.
And that’s ok, for a while. But your body can’t stay on high alert all the time. Your autonomic nervous system consists of two parts, and you need a healthy balance between the ‘fight-or-flight’ state of the sympathetic nervous system and the ‘rest and digest’ state of your parasympathetic nervous system.
So without a compassionate mindset, real rest and major self-care after pushing yourself warrior-style, your nervous system gets way out of balance – and that only contributes to more exhaustion, depletion and symptoms.
How can you motivate yourself to ‘fight’ for your health, without creating a long-term stress response that depletes your body?
First of all, become aware of being in ‘spoonie warrior’ mode.
What are your thoughts on living with chronic illness? Is your condition something you have to battle or beat? Do you feel you have to fight to get through the day?
Forming a philosophy about sickness and your new reality isn’t something that happens overnight. But it can be helpful to pay attention to how you talk to yourself and others about your health and life. Make a mental note when you are using words like “I won’t let this beat me” or “I’ll keep fighting”. There’s nothing wrong with saying or thinking these things, as long as you remember that health is much more complex than a battle you either win or loose. That your body shouldn’t feel like a war zone all the time, and that accepting your illness is not the same as giving up.
You can and should use the spoonie warrior analogy when you need that determination and perseverance. Let if motivate you, but don’t get stuck in ‘fight’ mode.
Alternate being in ‘spoonie warrior’ mode with super self care.
You cannot push yourself, physically nor mentally, all day long. Your body and mind need time to relax and recharge. It’s actually in that state of deep rest that healing can occur.
So take your pacing to the next level. Take breaks after and in between activities. Not just sitting down and scrolling your phone, but really recharging yourself with a breathing exercise, mindful body scan or quick meditation. Also make room each day for real rest, something that releases the tension in your body and calms your mind. That can be soaking in a warm bath, getting a massage, doing gentle yoga poses or even singing along to happy tunes.
Recovering from and living with chronic illness is a marathon, not a sprint. So you have to be kind and compassionate with yourself. Treat yourself like you would support your best friend if he or she would be sick – understanding but uplifting, not feeling guilty about your limitations but celebrating tiny victories.
Ironically, to fight for your health, you sometimes have to let go of that warrior mindset.
Experiment with different approaches to get your through tough times.
The ‘spoonie warrior’ analogy isn’t the only way to make it through the pain. It might sound counterintuitive, but playfulness and a sense of humor can also give you the subtle energy boost and inspiration you may need. Studies even show that laughing can help you manage physical pain better.
But all kinds of positive emotions build your resilience – your ability to bounce back from stressful events. What’s more, joy, pleasure and enthusiasm increase your intrinsic motivation to go after your goals. So if you find yourself mentally preparing for your daily struggles, see if you can make room for cultivating positivity too. Something as simple as noticing and appreciating the simple pleasures in life can have a significant impact on your mood and motivation.
Finally, embrace ease.
I will always love Buffy and friends for how these shows helped me through my darkest days. And I still sometimes take inspiration from heroic stories and the ‘spoonie warrior’ analogy. But if, like me, you’ve been living with chronic health problems for long enough, you’ll probably crave for more ease in your life, not more struggle.
It can be freeing to choose the easiest solution instead of trying to push yourself through what you think you should be able to do. When you give yourself permission to ask for help, to get the tools and aids that make your life so much easier, or to ease up on your principles from time to time, you’ll free up precious energy. You’ll require less willpower to get things done.
You don’t have to prove yourself. The fact that you’re living with chronic illness is proof enough that you can do hard things.
And embracing ease is not just about practical things, but a state of mind too. You can psych yourself up to do your walk training like you’d train to become a Navy SEAL, or you can take the same stroll but focus on the natural beauty around you and the sensation of the sun on your skin or the wind in your hair. In both cases, you work on your fitness, but the two strategies make you feel completely different afterwards.
Making things easier on yourself can be really hard to do when you have these voices – in your head or in your life – telling you that you have to fight, that you’re just being lazy, that you can do anything if you just put your mind to it. But you don’t have to prove yourself – the fact that you’re living with chronic illness is proof enough that you can do hard things.
In a culture that celebrates hustle, you may feel lazy or like a quitter if you don’t ‘fight’ for your health every day. But accepting your current situation is not the same as giving up, and fighting doesn’t have to mean a daily struggle, with clenched teeth and fists. Going through life with chronic illness with more ease and real rest is probably more effective to support your health than being under constant pressure.
And just for the record:
No matter if you fight for your health, mindfully accept your chronic illness or use humor to cope, you’re always a ‘warrior’ in my book.
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