Need to know
In her book Illness as Metaphor (1978), Susan Sontag says: ‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’ Some people only pass through the kingdom of the sick, like tourists, but others unwittingly take up permanent residence. According to the Centers for Disease Control and Prevention, six in every 10 adults in the United States have a chronic disease. Four in 10 have two illnesses or more. Some 50 million of those people suffer from autoimmune diseases of unknown origin. Many COVID-19 patients with persistent symptoms now join the ranks of these long-haulers.
If you live with a long-haul illness, perhaps you knew the pleasure of life on the other side before you got sick. Or maybe you were born with life-long illness. I began in the kingdom of the well, took an unexpected trip to the kingdom of the sick at age 25, and have straddled the two worlds for almost two decades since. Felled by a case of mononucleosis that slipped into chronic Epstein-Barr virus, I became bedridden, eventually discovering that I also had several underlying tick-borne infections. I had to give up my job and my independence for the better part of three years. I battled my way to remission twice, through intense treatment and a shattering relapse.
Along the way, I learned through trial and error some tricks for leading a meaningful and happy life with chronic illness. Though not every lesson is appropriate for every illness, the intention of this Guide is to offer tips both from my own experience and from expert insights that may be applicable to various long-haul medical situations. Whether your chronic illness is stabilised or progressive, whether you wrestle with physical or psychological challenges, or both, we all want some agency over how the rest of our lives are written. My hope is that this Guide will offer some inspiration for creating your best life possible, no matter how you arrived in the kingdom of the sick, and no matter how firmly planted you are there.
It’s not about going back: it’s about moving forward
At my lowest points of illness, I was hyper-focused on the word ‘back’ – getting back on track, getting back to work, getting back to the activities I loved. I even threw a big ‘back to life’ party when I achieved remission for the first time. Though I still had limits on my energy and capabilities, I thought I was done with illness and that my health would continue to improve over time. Having lived with my family in Connecticut during my convalescence, I moved to Vermont to immerse myself in the mountain culture I loved, and started an editorial job.
Three months later, I relapsed completely.
The stress of that immediate deep dive caused my illnesses to come back in full force. I hadn’t realised that being in remission meant my illnesses were dormant, not gone. I hadn’t grasped how quickly and severely they could flare up. Once again, I had to relinquish my independence.
That relapse was a wake-up call. Ultimately, I learned that with my particular illnesses, there was no going back. Instead, I needed to figure out how to move forward in the context of chronic illness. Though I didn’t yet know the term – I’d learn it years later in graduate school – I’d been craving a ‘restitution narrative’, as the American author Louise DeSalvo called it in her book Writing as a Way of Healing (2000). In this type of narrative, the narrator returns to a pre-illness state, eg: ‘I broke my arm; it healed; now I’m better.’ We love those types of stories but, try as we might, sometimes we can’t write them for ourselves; our bodies have other plans. Some of you were born into a life of chronic illness, and there is no pre-illness state to return to. No matter our chronic illness, we can choose, at least to some degree, to write a ‘quest’ narrative, in which the author moves forward with their life in spite of illness or adversity.
You can’t control your illness, but you can control your narrative
When I stopped focusing on the word ‘back’, I reframed my thinking, and my way of being, so that my illnesses could come along with me. I learned not just to survive, not just to live, but to thrive.
What helped me achieve this shift? First, it was gaining a deeper understanding of my illnesses, their possibilities for relapse, and my role in controlling external factors that could affect those possibilities. ‘For the individual and the family or support system, the key issue is awareness of what the chronic illness is, what the person is going to encounter, and what will be coming up in the future,’ says Leo Shea, a psychologist and professor of rehabilitation medicine at Rusk Institute, a division of the New York University-Langone Medical Center in New York.
Beyond gaining a better understanding of my own illnesses, I needed a shift in thinking about how to best live with them. On a chance trip to the library, I was accidentally handed the wrong person’s call slip. Printed on that piece of paper was the title Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (2008) by Laurie Edwards. Though Edwards has a different chronic illness (primary ciliary dyskinesia) than me, her challenges were the same. By accepting her illness, she was able to attend graduate school and then work as a writer and teacher. I thought: If she can do that, maybe I can, too.
What to do
Shift your vocabulary
Changing my vocabulary helped me reframe my perspective on living with chronic illness. ‘What you want to do is put the illness into a positive realm rather than a negative realm,’ says Shea. For example:
- Replace ‘can’t’ with ‘can’. This doesn’t mean taking a ‘mind over matter’ approach by trying to convince yourself that you can do things you can’t. Instead, it means not focusing as much on what you can’t do, and instead relishing what you can. Rather than saying: ‘I can’t attend a birthday party because I don’t have the energy,’ try: ‘I can meet with friends for half an hour over Zoom earlier in the evening, so that I can still be part of the celebration.’
- Replace ‘restrictions’ with ‘needs’. I need to nap every afternoon in order to replenish my physical and mental energy. If I don’t, I get so exhausted that I might have to spend the next several days in bed. At first, I saw my naps as a restriction that held me – and the people I was with – back. And yes, my daily schedule may be unusual, but it’s because I have to meet a need just like anyone else. The more you can accept and honour your needs, the less restrictive they will feel.
- Eliminate ‘should’. For years, I felt like I should be pushing myself to work or exercise, despite feeling like I had constant flu. People would tell me: ‘You should go for a walk; it’ll make you feel better,’ or: ‘You should volunteer; then you won’t be so focused on yourself.’ For some chronic illnesses, those activities might be helpful; for mine, they would be detrimental. When you hear the word ‘should’, ask yourself: ‘Can I? If I do, will it be helpful or hurtful to my health?’
- Instead of ‘post-traumatic stress’, think about ‘post-traumatic growth’. Experiencing chronic illness, especially when it comes on suddenly, can be traumatic. Even if we see improvements in our health, we may suffer from post-traumatic stress disorder (PTSD); I sometimes still experience flashbacks to my relapse and worry it could happen again. But those who experience PTSD can also have post-traumatic growth (PTG), a ‘positive change experienced as a result of the struggle with a major life crisis or a traumatic event’, according to the Posttraumatic Growth Research Group at the University of North Carolina at Charlotte. Being bedridden was awful, but it also opened up new opportunities, new relationships, and a new appreciation for capabilities I had once taken for granted.
Make lifestyle changes
Create a life that makes managing your illnesses easier going forward. This doesn’t mean giving in to the illness, or giving up hope. It means allowing space for the physical and emotional feelings your illness brings up. ‘I tend to frame acceptance as a moment-to-moment experience, being open to whatever thoughts, feelings or sensations one is having – good, difficult, or indifferent – in that moment,’ says Joseph Trunzo, a clinical psychologist who works with chronic illness patients. ‘If you are constantly struggling to control, escape, or extinguish certain feelings or experiences, you are not able to live your life. Allowing them to be there, as uncomfortable as they may be, allows you to put your time and energy into living your life more.’
For me, it helped to think about the factors I could control in my life. You might ask yourself: ‘What lifestyle changes would honour my health, my needs, and my shifted vocabulary? What changes will help me have as many good days as possible?’ For me, this has meant taking a nap every afternoon, without exception, and finding work that allows me that flexibility; establishing good sleep hygiene; sticking to a certain diet; pacing myself and respecting my boundaries; and adapting my exercise routine to accommodate my illnesses. For you, it might mean something totally different. If you’re struggling with chronic depression, an afternoon nap might be counterproductive for you, and it might be better to go for a walk or meet a friend. If you wrestle with fibromyalgia, perhaps there are certain stretches at certain hours of the day that might benefit you. The idea is to take charge of your own wellbeing, to the degree that you can, by thinking about shifts that will honour your needs.
Making these shifts requires psychological flexibility, which Trunzo defines as ‘the idea that we need to be present with what is happening right now, free of judgment, and to respond in a way that moves us forward rather than getting stuck in the emotions or feelings of the moment.’ This flexibility is part of an approach Trunzo uses called acceptance and commitment therapy (ACT). ‘Find the underlying value in what you used to do,’ he says. ‘Loved going to your kid’s soccer game but can’t do it anymore? The value there is being present with and for your kid. Find another way to do that.’
When you make these types of changes, you’re creating your normal. And that normal will likely change as your illness progresses, or as you experience improvements or setbacks. In 2020, I became a COVID-19 long-hauler. My previous experience with chronic illness helped me make new lifestyle changes to accommodate new challenges brought on by COVID-19. The key is to be flexible with your body’s fluctuating needs, and make subsequent lifestyle changes.
Pace yourself, learn your limits, and set boundaries
After my relapse, I saw that, with my particular illnesses, taking slower steps worked better than the large leap that had set me up for that relapse. Once I achieved remission for a second time, I did not move five states away or rush into full-time work. Instead, I moved five minutes from family, and started volunteering a few hours a week. When that worked well, I did some freelance writing on my own schedule. It wasn’t until I’d established a steady routine around my new baseline of health that I even considered applying to graduate school and moving to another city. ‘There’s a tendency to set the gauge of productivity versus rest to what it was when you were healthy,’ says Trunzo. ‘This can have very negative consequences. Someone may knock themselves out of the game for days on end trying to recover from overexertion, meeting the perceived obligations of others or self, not recognising that rest is an important part of engagement.’
Pacing myself allowed me to shift into what Edwards in Life Disrupted refers to as ‘maintenance mode’, rather than cycling between reaching too high and crashing. ‘Ideally, you are doing things to about 75 or 80 per cent, then stopping,’ says Trunzo. ‘Sixty per cent is OK, too – whatever works for you that keeps you going steadily and evenly, trying to avoid major ups and downs.’
Maintenance mode looks different depending on the illness. For those of us with illnesses that cause post-exertional malaise (PEM), pacing ourselves is extremely important. If you have a condition like diabetes, maintenance mode for you might mean figuring out which foods and mealtimes help to keep your blood sugar stable. Once you determine the lifestyle changes that allow you the best chance of ‘maintenance mode’, it’s important that you honour those parameters. For example, I can be tempted to skip a nap if I want to visit with a friend or have a lot of work to do, but I know the price of doing so is not worth it. Only you know what your limits are, and only you and your doctors can determine which ones are best to respect and which can be stretched. Always return to the question: ‘Will doing this help or hurt my health?’
It’s also important to establish your boundaries with family, friends and employers. Think again in terms of what you can do rather than what you can’t. Instead of saying: ‘I can’t work in the afternoons,’ I offer: ‘I can work in the mornings.’ Your body needs to know that you’re working with it, not fighting against it. You can reassure and care for your body by respecting its limits and giving it what it needs. The more consistently you do this, the more natural it becomes.
Seek the right support
Whether you were born with chronic illness or took sick later in life, whether you have a physical disability or psychological illness, not everyone is going to understand your situation. Edwards writes:
There will always be people who aren’t willing to try to learn more about conditions and their implications. Their expectations of us will not change, so what has to happen is that our expectations of others must evolve. You can’t persuade or enlighten people who don’t choose to listen, so it’s not worth feeling you need to justify yourself or your conditions to them. Focus on the friends, family, and interested acquaintances who want to know more, who ask questions or offer support or admit they aren’t familiar with your condition but want to be.
I’ve found that it’s helpful not to just to have friends and family who ‘get it’, but to speak with someone who can offer professional, objective support and guidance. ‘It’s important for individuals to remind themselves that not only does the illness affect you physically, but it also affects the way you think about the world,’ says Shea. Find a mental health practitioner who has knowledge and experience of talking to patients with your particular illness.
You want your whole medical team to help you live your best life with chronic illness. This may mean changing practitioners once, twice or 10 times. It took several years for me to be accurately diagnosed. Part of the problem was that I was seeing doctors who weren’t really hearing my story; who weren’t catching the clues that could lead them to the cause of my symptoms; who were quick to write off those symptoms as ‘all in my head’ when I didn’t fit into an easy diagnostic box. Join support groups, talk to other people who have your illness, do your research, and find out where you can get the best medical support. Read books on your illness and educate yourself on different treatment options, including alternative or adjunct therapies that are available for your condition. The idea is to reject a victim mentality of ‘I’m sick and no one understands,’ and instead take agency over your care, determining: ‘Who and what can best help me achieve wellness, even if my definition of wellness has changed?’
Allow yourself happiness and fun!
Living with chronic illness isn’t easy. Managing chronic illness can be a full-time job. But whether you reside in the kingdom of the well or in the kingdom of the sick, you deserve the same happiness, relaxation and fun. ‘Social interaction provides [patients] some way to get out of the darkness of their illness,’ says Shea. ‘Figure out times during the week when you can have fun, and what that fun constitutes, whether it’s watching a TV show, having a friend over, or telling friends to keep inviting you to events so you feel included.’ If we wait to have fun until we’re feeling relatively well, or until we can do what we think we ‘should’ be able to do, we miss out on precious days of life.
Key points – How to live with chronic illness
- It’s not about going back: it’s about moving forward. You aren’t going to be able to go back to a pre-illness state. Instead, you need to figure out how to move forward in the context of chronic illness.
- You write the narrative. No matter how sick you are or how progressive your disease is, you can take some agency over how you write the rest of your life.
- Shift your vocabulary. Focus on positive rather than negative words, like what you can do instead of what you can’t do.
- Make lifestyle changes. Ask yourself: ‘What lifestyle changes would honour my health, my needs, and my shifted vocabulary? What changes will help me have as many good days as possible?’
- Pace yourself, learn your limits, and set boundaries. Figure out what lifestyle gives you the best chance of staying in ‘maintenance mode’. Then honour your limits and speak up for your needs.
- Seek the right support. Find people who are willing to walk the journey with you, even if they don’t completely understand your situation. Research treatments and practitioners to make sure you’re getting the best possible care, and remember that you need to look after your mental and emotional health in addition to your physical health.
- Allow yourself happiness and fun! You deserve – and need – breaks and joy just as much as a healthy person.
Writing about your illness can help you learn from it, accept it, and grow from it. Writing allows you to literally come to terms with – find the words for – your experience. When you write your stories, you take agency over your narrative. As DeSalvo says in Writing as a Way of Healing:
[I]llness and disability necessitate that we think differently about ourselves, about everything. We can write a new story for ourselves, to discover who we are now – what we’re feeling and thinking and what we desire.
You can write for yourself or, if you choose, you can share your work with doctors, friends or family members to help open lines of communication. This is called narrative medicine, a term originated by Rita Charon, a physician and executive director of Columbia Narrative Medicine at Columbia University. Narrative medicine facilitates understanding. As the author and poet Maya Angelou said, through writing, the ‘I’ becomes ‘we’.
Writing prompts to try
- How do you define wellness? How about thriving?
- Write a letter to your illness. What do you need it to know?
- Write a letter to someone who is part of your support team. What do you need them to know about your illness?
Writing becomes truly healing when we go beyond just getting the words on the page but also reflect upon them. DeSalvo suggests that writers do a ‘process journal’ after writing. In it, reflect upon what it was like for you to write your piece. What feelings did the process bring up for you? What surprised you about what you wrote? Did you learn anything new about yourself, or your illness, after re-reading your work? Process journals allow us to connect our feelings to our writing, and, as DeSalvo says, ‘are an excellent resource to use to learn about ourselves’.
Links & books
To learn more about using writing as a healing tool, including steps, guidelines and boundaries, I suggest reading Louise DeSalvo’s book Writing as a Way of Healing (2000) in its entirety. I use this book as the theoretical base for my Writing to Heal courses.
You can learn more about the concept and practice of narrative medicine through Rita Charon’s book Honoring the Stories of Illness (2006), and Annie Brewster and Rachel Zimmerman’s book The Healing Power of Storytelling (2022).
If you’re looking more for a how-to manual that might take you deeper into some of the ideas explored in this Guide, check out Laurie Edwards’s book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (2008). The nice thing about this guidebook is that it’s broken down by sections and chapters, so you can pick and choose the topics that are of interest to you. Though the book is geared towards patients in their 20s and 30s, many of the lessons are applicable to a broader audience.
If you like shorter, topic-based reads that have illness lessons applicable to wide audiences, check out Suleika Jaouad’s past New York Times ‘Life, Interrupted’ blogs (about her experience with cancer), or my blogs for the Global Lyme Alliance and other outlets (about every aspect of living with tick-borne illness, many of which are relevant for other chronic illnesses).
Finally, if research is more your thing, you might check out Laurie Edwards’s book In the Kingdom of the Sick: A Social History of Chronic Illness in America (2013), or Steven Phillips and Dana Parish’s (with Kristin Loberg) more recent book, Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again (2020).