By Chiu Lau, Clinical Psychologist & Founder of Possibilities Psychological Services
Artwork from pinterest
I’m very close to publishing my debut children’s picture book The Little Light & Colour Thief. And lately, something pleasantly unexpected has been happening.
Friends who have published their own books have been incredibly encouraging. They’ve suggested book launches. They’ve shared ideas about increasing the book’s visibility. They’ve encouraged me to contact local bookstores and libraries. Some have even generously offered to introduce me to people in their publishing networks.
It fills my heart with joy, and if I’m honest, reassurance, that they believe in The Little Light. And that they believe in me.
But there’s something they don’t quite understand. They know I have ME/CFS. What they may not realise is that ME/CFS is an energy-limiting disorder, and that the disability extends far beyond simply being “very tired.” Unless you have lived experience of ME/CFS or Long Covid, it’s difficult to understand what that actually means.
After I’ve completed my clinical work for the week, I don’t have a second tank of energy waiting for me. The battery is, quite literally, running low. Whatever energy I have left needs to be carefully rationed between the things that keep me functioning: cleaning myself, feeding myself, keeping my home reasonably tidy, taking my little dog for short walks, and maintaining relationships through text messages. By a certain time in the evening, after I log off my last Telehealth session, I have approximately 90 minutes to do whatever needs to be done before I need to be horizontal. Otherwise, thanks to dysautonomia, I may literally faint.
My days off work aren’t exactly days of leisure either. Across my two days off, I spend around eight hours with my partner in person. By the second day, I can be so depleted that I am almost non-verbal. That is what “rest” can look like when your body has a very small energy budget.
So when someone says:
“You should do a book launch!”
or
“You should go on that podcast!”
or
“You should attend this networking event!”
I completely understand why they’re suggesting it. Because, really, these are excellent suggestions for a new author. They aren’t being insensitive. They’re trying to help. They see something I’ve created that they believe deserves to be seen, and they are excited for me. That is incredibly generous. It makes me feel loved. But what they don’t see is the invisible accounting that happens behind every “yes”.
If I actively promote the book, I have to take that energy from somewhere:
- I might have to take it from time with my partner.
- Or my self-care.
- Or my basic activities of daily living.
- Or from Teddy (click on the link to witness his cuteness).
- Or I might have to cancel clinical work.
And then, after the event, I may need to cancel several more days of whatever would normally be on my schedule in order to recover. There is always a cost.
And “just push through” isn’t helpful advice for someone with ME/CFS or Long Covid. Because sometimes pushing through doesn’t result in a productive day followed by a good night’s sleep. Sometimes pushing through results in a P.E.M. crash. And that crash can potentially push someone into the next severity level. At worst, people can become permanently stuck there, housebound or bedbound. It’s difficult to explain this to someone whose body reliably responds to effort with recovery.
Also, this is particularly difficult for a Capricorn (IYKYK). We thrive on getting shit done. We make lists. We make plans. We become wildly ambitious about things we care about. So there has been a lot of grappling with frustration, anger and grief.
It’s just one podcast. Go on, accept the invitation.
It’s just one book launch. Go on, accept the invitation.
It’s just one networking event. Go on, accept the invitation.
But it’s never “just one” thing with ME/CFS. Every additional thing has a ripple effect. Every “yes” has an opportunity cost. And sometimes the hardest thing is accepting that being well enough to do some things doesn’t mean being well enough to do more of the things you love, enjoy and believe in.
That has been hard for me. Really hard. Because I have ideas. I have enthusiasm. I have things I want to create. I have people I want to connect with. And I have spent much of my life believing that if something matters enough, I should be able to work hard enough to make it happen.
But my body has taught me that there is another way to measure a meaningful life.
Capacity.
Not ambition.
Not productivity.
Not visibility.
Capacity.
And, honestly, I am one of the lucky ones. In the rough sea of ME/CFS, I sit in a small, semi-sturdy boat. It’s not a particularly luxurious boat. It has holes. It needs constant maintenance. Sometimes the weather is terrible. But I’m in it. Other people are desperately hanging onto door frames like Leo DiCaprio in Titanic. And remembering that helps me put things into perspective. I have capacity for a life that is still filled with people, activities and things I value.
So perhaps I don’t need to build the same career, business or publishing platform as the authors I admire. Perhaps I don’t need to emulate what a “real author” is supposed to do. Perhaps I can simply build the version that fits inside my boat.
I can set up an imprint.
I can write little books, or, more realistically, polish up the drafts that have been sitting in a folder for years.
I can create a team of people to bring these books to life.
I can quietly publish The Little Light & Colour Thief, a story about navigating big feelings that I am incredibly proud of and excited to share with children.
I can engage in community service by donating a portion of the proceeds to charities I support.
I can tell my friends and colleagues.
I can let the people who believe in it help me when and where they can.
And then I can stop.
I can rest.
I can enjoy the fact that I made a thing.
Maybe The Little Light doesn’t need a giant launch. Maybe it doesn’t need me to exhaust myself trying to make it visible. Maybe it simply needs to exist. A little book, made with love, finding its way quietly into the hands of children who might need it. And perhaps that is enough. Actually, perhaps I am enough. Even when I am not doing all the things. Even when I have to say “no, thank you” to exciting opportunities. Even when someone else can see a possibility for me that my body cannot currently accommodate.
I can be grateful for the people who believe in me without having to prove that they are right. I can be excited about what I am creating without turning that excitement into something that harms me. I can honour the limitations of my body without making my life smaller than it needs to be. And I can celebrate what I can do.
For now, that is enough.
And perhaps, for this little book, it is exactly the kind of lesson I want to be living while I share it with the world.
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Chiu Lau (she/her) is a neurodivergent Clinical Psychologist living with an invisible disability. She is also the founder of Possibilities Psychological Services, an Australia-wide online therapy provider. Since 2003, Chiu has developed extensive experience in the assessment, diagnosis and management of mental health concerns, trauma, chronic health conditions, neurodivergence (including autism, ADHD, PDA, and learning and intellectual disabilities), and psychosocial stressors experienced by gender-diverse individuals. Recognising the challenges associated with navigating various intervention and mental health provider options, Chiu invites you to book a complimentary 20-minute discovery call to explore your options and possibilities here.