What My Favourite Fictional Heroines Taught Me About Battling Chronic Illness
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Having a chronic illness like multiple sclerosis, POTS or pulmonary disease can have a major impact on many aspects of your daily life, from not being able to work, go to school or hang out with friends to having to follow a strict diet and recovery routine.
With your life turned upside down like that, it’s no surprise that you may be struggling with some existential questions. You may be wondering, who am I now, now that my illness has stripped away so much of what I used to do and enjoy? What’s the point of my life if all I can do is lie in bed?
It’s perfectly normal to feel confused and conflicted about your identity, your place in the world and the meaning of (your) life when you’re living with chronic illness. There are no easy answers to these kind of questions, and no quick fixes.
But psychiatrist and Holocaust survivor Viktor Frankl believes that life has meaning even in the worst circumstances.
“If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.”
(from: ‘Man’s Search for Meaning’)
Let’s take a look why it’s so important to have a sense of meaning in life, and how you can find (new) meaning when you’re living with chronic illness.
What exactly is meaning?
According to research on meaning, it’s not that a life in itself is meaningful or not – it’s whether it’s experienced as meaningful. Only you can assign meaning to experiences and to your life as a whole, and only you have the power to realize the potential meaning of your life.
When we talk about meaning in this article, we’re not referring to, as Marin Seligman called it, “the icing on the cake of psychological wellbeing that’s only reserved for a few lucky souls”. Instead of some form of enlightenment, meaning is seen as a driving force inside every human being that gives direction to your life.
And not necessarily in a grandiose way. A meaningful life does not have to encompass big quests like finding the cure for Alzheimer’s or solving the climate crisis, nor to devoting your entire life to others without caring for yourself. No, you can have a meaningful life through your unique abilities and outlook on the world.
Psychological studies have determined that meaning has three main components:
- Purpose – having goals to work towards and a general direction in life;
- Significance – believing your life has value, worth and importance;
- Coherence – having some level of predictability so that life make sense to the person living it.
A recent research program has added a 4th factor to this list, namely experiential appreciation – enjoying the beauty in everyday moments.
That means that relatively simple things, like setting attainable goals for yourself, connecting with the people in your life, having meaningful routines and savoring simple pleasures, can all be ways to find (new) meaning in your life, even if you’re chronically ill.
Why is it important to foster a sense of meaning?
Nietzsche said it best: ‘He who has a why to live for, can bear almost any how.’ Meaning is a strong and sustainable source of motivation. It drives you to get out of bed in the morning, to make the most of any given situation and to pull through the toughest times.
In the Nazi concentration camps during World War II, Viktor Frankl became intrigued by the psychological state of his fellow prisoners. What helped some people to keep faith in these dehumanizing conditions, while so many (understandably) lost all hope?
Frankl noticed how the men and women who had “a task waiting for them to fulfill were most apt to survive.” That realization became the foundation of his logotherapy and world-renowned book ‘Man’s Search for Meaning’. Tragedy is an inevitable part of life, but through our search for meaning, people can endure and overcome suffering.
An overview study into logotherapy confirms that a having a sense of meaning is linked to more resilience and more satisfaction with life. What’s more, people with purpose in life are more likely to have better health and stronger relationships. Our search for meaning in relationships, achievements and giving back shapes our goals and how we react to frustrations in life more than we think.
When chronic illness changes your sense of meaning
Maybe you used to have a purpose in your life, but now you can no longer pursue that goal or work the job that brought you fulfillment. Maybe you found meaning in relationships and experiences before you became ill, but now you can’t look after your family or explore the world anymore.
Grieving over all the things you can no longer do can make you feel empty inside, sometimes even worthless. It may seem like life has become pointless and lost all meaning. But Viktor Frankl believed that, under any and all circumstances, people have the power to tap into the resources within them to transform adversity.
So what can you do to find new meaning when your life’s been turned upside down?
There is no one-size-fits-all answer to this age-old question that philosophers have been debating about for centuries. But here are some actionable ideas to get you started with your own search for (new) meaning.
21 Actionable Ways to Find New Meaning in Life with Chronic Illness
Connect with the people around you.
We all want to belong, be close to people and feel like we matter. That’s why having strong relationships proves to be such a reliable way to add meaning to our lives. There’s nothing like the love for your partner, parents or kids to get you out of bed in the morning on days when you feel like giving up.
In the bestselling book ‘Ikigai‘, ‘fostering community’ is named as one of the crucial reasons why people in so-called Blue Zones tend to live such long and happy lives. Other research confirms that feeling close and connected to family and friends makes life meaningful, while being lonely and excluded reduces feelings of meaning.
But how can you form and keep strong bonds with the people in your life when your body and brain make it so hard for you to socialize, especially if you’re sick at home much of the time? Here are some ideas on how you can find (new) meaning in life by staying connected:
1. Break the isolation. Loneliness hurts, literally. So please, reach out to the people in your life, even if it’s just texting with an old friend or greeting a neighbor. Don’t be afraid to ask your friends and family for company or emotional support. If you don’t have caring people in your life, you can try to make new friends in spoonie-proof ways.
2. Deal with emotional loneliness. Even when you’re surrounded by people, you may feel like nobody understands you. This kind of emotional loneliness can be just as heartbreaking as truly being alone, and not necessarily easier to solve. It can help to learn to communicate your feelings clearly and constructively, and to look for people who do get what you’re going through. They do exist, and you’re not as alone as it seems right now.
3. Be a good friend, partner or relative, even when you’re chronically ill. It’s normal to be absorbed by your own problems and pain, but try to show interest in your friends’ lives too. Listen to their stories and be happy for them, even if it stings. You can be happy for your friend and sad for your own missing-out at the same time.
4. Find doable ways to connect. Ok, so you can no longer head out for drinks on the weekends or play tennis with your friends. But that doesn’t mean you can’t have a good time together. Make a list of not-too-straining fun things you could do on good days, like having a picnic in the park, starting a book club or eating pizza in bed, whatever you both enjoy. And during bad weeks, save some energy for a short call or a sweet text to stay in touch.
5. Focus on other people. One of the techniques that Frankl’s logotherapy uses to find meaning in life is called ‘dereflection’, or redirecting your attention away from your own pain and towards other people. By focusing on being kind to others, not only do you add meaning to their (and your!) life, but you also literally make space in your mind for positivity, instead of going over and over the same problems again. For inspiration, take a look at these 44 acts of kindness anyone can do to spread a little love.
Boost your mood.
According to science, having a good mood is the most robust and sustainable predictor of experiencing meaning in life. What’s more, a positive affect can even compensate for things that reduce your sense of meaning, like a low socioeconomic status, a lack of faith and few close relationships.
Pretty impressive, right? But living with fatigue, chronic pain and other symptoms every day makes it challenging to be happy. What can you do to boost your mood and in turn add more meaning to your life?
6. Build science-backed habits that support good mood. Gently moving your body and heading into nature both improve your brain functioning, while getting enough sleep and working with your hands reduce depressive feelings. Creating healthy habits that stick takes time, but they will help you feel better emotionally and physically.
7. Learn how to deal with limitations and depending on others for help. It’s hard to experience a deep sense of meaning when deep down you feel worthless, or you worry you’re just a burden to the people around you. When you’re struggling with negative thoughts and feelings about yourself, swap your inner critic for a more compassionate look on your situation. You can also strengthen your self-worth by identifying the strengths you still have and finding ways to maintain a sense of independence despite your illness.
8. Find ways to cope with real FOMO. Let’s be honest: it sucks when you’re missing out on life because of your health problems. And talking about finding new meaning in life can definitely trigger those feelings. After all, you’d probably be happy and satisfied with life if only you’d be able to do the things that bring you joy again. It’s normal to be sad and frustrated about all the things you cannot do, just don’t let the grief, envy and resentfulness build up. Take a look at this in-depth article on what you can do when you experience legitimate FOMO due to chronic illness.
9. Make time to cheer yourself up. To be in a good mood, we need a healthy balance of negative and positive emotions. And in many cases, living with arthritis, diabetes or ulcerative colitis brings you plenty of pain, sorrow and anxiety, while also making it harder to go out and have fun. So making time for simple pleasures is not a luxury when you’re sick, but a vital part of your wellness plan. You could bring back some laughter in your life with comedy shows, humorous books or a joke jar. Play your favorite upbeat songs, choose a screen saver that makes you smile everything you open your phone and laptop, or embrace your inner kid by building a fort or jumping in a puddle. It also helps to make a list with ideas on how you can cheer yourself up on days you’re feeling down.
Develop (new) passions.
Passion is such a loaded word, right? Like you have to find one (and only one) meaningful activity that you have to fully enjoy all day every day, for the rest of your life. But for today’s purpose, passion simply refers to any activity that excites you.
Studies show that adults with a harmonious passion – meaning, they don’t get obsessed by it – report more meaning in their lives, better health, and lower anxiety and depression than adults without any passion. Following your passions also gives you goals to work towards, which we saw is a contributor to finding meaning.
So how do you find a (new) passion? Well, having limited energy or being housebound doesn’t really help, but with some creativity, there are some things you can do to develop new interests or get excited again.
10. Uncover your core values. Your values can be a great road map when you’re searching for meaning and finding your passions. Values like authenticity, creativity, kindness and personal growth give a general direction to your life and help you to prioritize your limited energy to what matters most to you. After all, you’ll make different choices when you prioritize adventure in life compared to when you care most about contributing to the world or gaining wisdom. You could have a look at a list of values or take a (free) quiz to help you determine what your core values are.
11. Find your ‘ikigai’. Ikigai is the Japanese concept that means ‘having a reason for living’. According to Héctor García and Francesc Miralles, ikigai is one of the secrets why Japanese people in general lead such long and healthy lives. The authors say you can find your own ikigai by asking yourself 4 questions:
- What do you love to do? What makes you feel alive or lose track of time?
- What are you good at? What knowledge and skills did you pick up over time? Which other mental and emotional strengths do you have? (Hint: your illness probably didn’t just take away things, but also taught you more than you may realize.)
- What does the world need? Doing anything, big or small, that makes the world a better place is what adds that extra layer of meaning to your ikigai.
- What can you be paid for? How can you be financially rewarded for what you love to do and what you’re good at?
That final question may not be applicable to you when you cannot work. Plus, living with chronic illness makes you add one more dimension: What are you able to do, physically and mentally? But first, get a pen and paper and brainstorm freely, without worrying about your limitations and the obstacles on your way. Write down what feels exciting, all the skills you’ve developed in life, even if they’re hard to do now. Only once you’ve done that, try to come up with out-of-the-box ideas to make your passions and skill set shine, albeit it in a small or a different way than you had originally imagined. Even when you’re sick and stuck at home most days, you have a unique gift to give to the world.
12. Do activities that get you into a state of flow. Flow is the state in which you’re so involved in an activity that nothing else seems to matter. It involves doing something slightly outside of your comfort zone, but not too difficult, that’s rewarding in itself and comes with a clear goal in mind. For me, writing gets me into a state of flow; for you that might be diamond painting, gardening or playing chess. If you don’t know where to start, check out these creative activities or some fun things you can do when you’re bored and sick at home alone. According to the book ‘Ikigai’, being in a flow state helps you discover your own reason for living.
13. Experiment with modified ways to practice passions you’ve always loved, but can no longer do due to chronic illness and other limitations. See if you can pinpoint what exactly it is about nature hikes, theatre or volunteering that excites you – the scenery, the company, the self-expression – and if you could make that happen in a spoonie-proof form. That may not be easy and not always possible, but trying out aids, asking for help or coming up with creative solutions to overcome your obstacles could bring that spark of passion and meaning to your life.
Explore faith and meaningful rituals.
14. All throughout history and the world, religious faith has given people a great sense of meaning in their life. That’s partly because religion provides a framework that helps us make sense of the world (the coherence we spoke about earlier), even when life feels like an emotional rollercoaster. What’s more, having faith can steer your life into a certain direction and help you to set goals that bring you purpose. So if you’re searching for new meaning in life with chronic illness, you could explore religious scripts, attend a (virtual) service or build a spiritual practice like saying grace before dinner or praying at bedtime.
15. Not religious? Performing rituals can get you into a state of flow, which in turn can help you to uncover what drives you. And by definition, rituals are a set series of actions that have meaning to us; to mark memorable moments and to put our values into practice. Traditions that have been passed down over generations also keep you rooted to your family tree and your culture background, making you feel like you belong to something bigger than yourself. The good news is, you can develop your own rituals (too), from lighting a candle for a struggling loved one and gratitude journaling to creating a ‘Miracle Morning’ routine or mindfully making one cup of artisan tea each day like you were part of a Japanese tea ceremony.
Appreciate the small things in life.
According to recent research, valuing your experiences contributes to having meaning in life. But how do appreciate the good things in life when you’re tired, in pain and worried?
16. Practice mindfulness. The first step to appreciating the meaningful things in life is to notice that they’re there. And that’s not always easy to see when you’re sleep deprived, overwhelmed or sick in bed all day. By doing mindfulness exercises like a walking meditation, a body scan or simply washing the dishes with your full attention, you can learn to pause your monkey mind for a moment and train your brain to look for the good things in life, even when life’s challenging.
17. Engage your senses and embrace simple pleasures. You don’t have to put on rose-colored glasses to still find the beauty in everyday moments. Tune into you’re five senses and become aware of the sun on your skin, how the morning light streams into your room, the smell of freshly cut grass or your baby’s hair. Savor simple pleasures like drinking your latte on the balcony, cuddling your pet and hearing your favorite song on the radio. For one day long, document every tiny happy things that happens to you, with photos or in a gratitude journal. These simple pleasures may seem meaningless compared to all you’ve lost and all you’re dealing with. But in my experience, it’s the small positive things that make the big negative ones a little easier to bear.
18. Evoke awe. Have you ever had goosebumps or a chill down your spine when you were standing among the tallest trees, heard your favorite artists perform live or watched the most amazing work of art? Awe is a complex emotion, that makes you feel like you’re part of something bigger than yourself and more connected to others and the world. Making room for activities that could elicit awe, like spending time in stunning natural surroundings, listening to a wide range of music, watching the sunrise, looking at documentaries about space or learning about majestic landmarks like the Taj Mahal, can be fun ways to find new meaning in life.
How to start your search for meaning:
When living with chronic illness has gotten you all wrapped up in existential questions about life, where do you start your search for new meaning? Here are a few things to keep in mind.
19. Go small and slow. You don’t have to turn your life around, make big gestures to show you can still contribute to the world or set ambitious goals for yourself. It’s perfectly fine – and even more constructive – to take small steps to accept your new reality and find your new role in life.
You also don’t have to create an entire new life philosophy. In Man’s Search for Meaning, Viktor Frankl says we should find meaning in the daily moments rather than *the* meaning of life. You don’t have to have the big picture of life all figured out to start experiencing meaningfulness in the tiny achievements you’ve made, in connecting with someone for just a brief moment, by admiring the sunset at night.
20. When you don’t know where to start and what a meaningful life means to you personally, you could read books about finding meaning to uncover your personal values. You don’t even have to agree with the author’s views – sometimes reading other people’s thoughts about difficult topics helps you form your own opinion. From ‘The Daily Stoic‘ by Ryan Holiday and ‘Walden’ by Thoreau to ‘The Prophet‘ by Kahlil Gibran or ‘Siddharta’ by Herman Hesse, there’s a philosophy available that will appeal to you.
21. Finally, remember that a meaningful life doesn’t start once you’ve conquered your illness – you’re living one right now. To paraphrase what Oliver Burkeman, author of ‘Time Management for Mortals’, said on The Psychology Podcast (around 43m00): “The problems are life. Solving these problems, that’s the thing you’re supposed to do. The idea that you’ve got to get rid of all these problems so you get to the ‘real’ stuff of life, that’s the illusion.”
Finding new meaning after your life has been turned upside down by chronic illness or other problems is not easy. It’s a gradual process that takes time and emotional effort. But this guide shows you that there are simple, spoonie-proof things you can do to add more meaningful moments to your life, even when you’re sick and struggling.
What’s helping you to find new meaning in life with chronic illness?
