Finding peace living with a chronic illness
Waking up to a nightmare
One morning in May 2017 I woke up to what felt like the weight of 10,000 hangovers. Except, I wasn’t hungover. For the next five weeks I struggled to even walk to my kitchen. My limbs were heavy. I was perpetually dizzy and on the edge of a migraine. I couldn’t hold a conversation. Suddenly my vocabulary seemed to have halved. I became hyper sensitive to light and sound. These were the early tell-tale signs of chronic fatigue syndrome (CFS), or myalgic encephalomyelitis.
What is a ‘crash’?
To varying degrees we’ve all experienced burnout. Have you had days where you’ve felt so weak with exhaustion, so baffled by extreme brain fog and so compromised in your immunity that you ‘just can’t’? Life feels impossible.
The difference between burnout and CFS, however, is that we can recover from the first, but the latter lingers indefinitely. It’s like a terrible nightmare where no matter what we do — no matter our efforts, consistency or determination — we never get better. We may get ‘tricked’ some days: we suddenly feel completely fine and become convinced we’re healed. Then, BAM, one tiny overexertion and we’re back to bed ridden.
Periods where symptoms of a chronic illness are at their worst are called ‘flare ups’. People experience chronic health issues with their bones, vision, mental clarity, speech, muscles, skin, connective tissue, reproductive organs, endocrine system, you name it. In my private therapy practice and personal life I’ve met people with fibromyalgia, CFS, early onset arthritis, endometriosis, PCOS, psoriasis and more…
The mechanics of the human body are so intricate, there are millions of ways things can go wrong. However, so long as we see it as wrong or your body as broken, we close off pathways to possibility. Look for another word to describe your experience — unique, unexpected, unfair, baffling, bizarre, but please, never see it as wrong. Keep reading and I’ll tell you why this creates more harm to not just ourselves, but broader society, if we see ourselves and others in this way.
Facing other people’s disbelief
“Surely it’s not that bad,” people told me. “Shake it off, go for a walk, busy yourself. It’s only temporary” they insisted. To those who haven’t lived through any chronic illness, the symptoms are incomprehensible to them. That’s one of the hard-to-grasp things about CFS — it’s not like the usual ‘sluggishness’ that can be remedied with fresh air and some movement. What works in helping someone who is simply tired is completely different to someone experiencing a CFS flare up. Even something as ‘trivial’ as scrubbing the dishes can trigger a burn out, sending us to bed for days.
Living with a chronic illness does not mean we’re ‘unhealthy’ — it simply means that achieving an optimum level of health is harder for us.
Defining a new normal
Ever since my crash in 2017, my energy, immunity and morale never were the same, until recently. My recovery was tedious and painstaking. For three years, if I stepped out of line with my health ever so slightly, I could never bounce back like I used to.
I now know my limits and listen to my body. I’ve learnt that, for me, my hormone levels throughout the month dictate when I’m most likely to crash. So, I account for this fact and I’ve grown to accept it, rather than resentfully resist it.
There’s a lot of advice out there around self-care for chronic illness, but perhaps less talk around the ‘mindset’. Having studied narrative therapy and become a registered counsellor during those difficult three years, I came to develop a more compassionate relationship with myself. I’m certainly no master in this and my recovery is an ongoing process, but I wanted to share what’s been helping me so far in my journey.
To be clear, my particular chronic pains and illnesses have sprung up as side effects from being born with a deformity called talipes and also from having a rollercoaster of a ride with my hormones since getting my period at 10 years old.
From resistance to acceptance: three tips to find peace
Of course I’m going to recommend this — I’m a therapist myself! However, speaking from my personal experience, seeing my own counsellor while enduring my darkest chapters of despair and pain was honestly the main thing that got me through. For one, therapy provides us space to feel heard and validated, especially when the therapist has lived through similar health conditions themselves.
Therapy also helps us untangle the relationship between our self-worth and our illness — being sick all the time can lead us to feelings of inadequacy, shame, failure, resentment and more.
If unprocessed and ignored, those emotions can drag us down and make achieving our optimum health harder to reach. We want to be providing ourselves with the best potential to thrive that we possibly can.
Our mental health is the foundation that carries us through when our physical health can’t.
Addressing problems with our physical health can be a long, arduous task; so ensuring that we’re doing our best to be our own ‘best friend’ during those periods is paramount.
There will always be more keeping a ‘problem story’ alive in your life than you currently think. This applies to any facet of your life. Like I often say, a ‘problem’ is only a problem if we call it one. Question is, who decided it was one in the first place? Was it your parents, capitalism, white culture, the patriarchy, religion, your schooling, workplace, the media? This is why we seek therapy — to uncover the subconscious narratives ruling our lives.
In the meantime, here are some self-therapy questions for you to consider:
What stigmas might you have inherited around illness or mental health from your parents, family and the communities you’re connected to?
Did falling sick suddenly reveal to you all the unconscious biases and judgements you’d been holding and taking for granted? What do you truly think about these stories now that you have new perspectives?
Are you hanging onto old narratives of ‘success’, wellness and self-worth that no longer support you in your new reality?
Chronic illness is not something to ‘fix’. The more we hold onto the expectation that we can eradicate it from our life the further we take ourselves from reaching a place of peace. Seeing our illness as something we can eliminate (and life will only be better ‘when’ we do) only hurts us more than the condition itself. Here’s the great news:
Although we can’t always change our conditions, we can definitely change our relationship to those conditions. This applies to anything in life.
Thinking in this way keeps our mind open to the possibility that in order to thrive, the changes that we need to implement to bring ourselves greater happiness mightn’t be those we expected. When we attach ourselves to outcomes we breed resentment, disappointment and frustration, which unsurprisingly feed into our chronic illness more!
Yes, there’s room in the journey for determination, proactivity and transformation, but we need to remain open-minded and flexible to what the future holds. You may currently be attached to a plan of what will make you happy, but trust this: when you detach from outcomes and expectations your future self will find a version of happiness and fulfilment that you currently cannot even imagine.
So, surrender. It’s not pessimism. It’s not ‘giving up’. It’s unapologetic acceptance. Don’t apologise for being who you are, for being unable to fulfil exclusive standards society has set you, and for taking the time you need to build a better relationship with your conditions and yourself.
#3 Create a ‘Crash List’
I love the gym, and I love my work, so when I crash and am unable to do those two things my mental health spirals into dramatic doomsday thinking — “if this is what my life has come to, where I can’t do the things I love, what’s the point?”
The thing is, there are so many other aspects to life I enjoy (and things that I need to get done) that I forget about when I’m ‘up’ and ‘well’. In our fast-paced lives we often don’t create space for those things, so remind yourself of them — create a list.
I turn to this list during my crashes (for me they generally last one to two weeks out of every month) as a hopeful, kind message to myself of, “hey, don’t worry, there’s plenty you can do in the meantime that both honours the rest you need and allows you to continue doing the things you love and need to get done”.
To create this list, start to observe what you can do during a crash. During these times do you need to be horizontal? Do you get migraines? Do you struggle to concentrate? Does your mental health suffer? Do you get so fatigued you become weak and can’t keep your eyes open? What helps with the pain? Do you have a short fuse and little patience? Are you able to look at a computer screen? Do you become overly sensitive to light and sound?
Make your list so extensive that there will always be something to suit the state you’re in if it varies from crash to crash. I create this list when I’m well because, GUESS WHAT, there are actually things that are better done during a crash! So, I write them down to do later.
In my ‘up’ times I can be so hyper-active and flighty that I struggle to sit still and have a short attention span. When I’m ‘down’ my energy is of course more subdued. I’m not in a rush and because my thinking is far slower, I can take the time to expand and ‘meditate’ on my ideas more deeply.
Rather than getting angry for being dealt the cards we were, see it as simply a different way of living (I write more on how we can embrace this further below).
Here’s my personal ‘Crash List’:
A queue of specific podcast episodes. Searching the internet or contacting people for recommendations can be a hassle in itself — prepare this list in advance so all you need to do is hit play.
Boring admin or tech tasks like sorting computer files, backing hardrives, completing back-end business tasks, updating calendars. If struggling to concentrate this can be a good ‘mindless’ activity to keep you feeling productive, and you can even listen to calming or uplifting music at the same time.
Errands within walking distance, like grocery shopping
Spring cleaning (a clean house leads to a clear mind, I say)
Mini visual projects, like creating a vision board, photo album or artwork. Sometimes my brain is so fuzzy I can’t even articulate words, so I stick to more image-based tasks.
Walk or get outside of the house, especially instead of something of higher intensity like riding or the gym
Call that friend you’ve been meaning to reach out to for a while
What about my responsibilities, like my job?
Maybe you’re thinking, what if my work doesn’t allow me to choose my own hours? I’m accountable to deadlines, meetings and office hours. When I crash I can’t just opt out. And what if I have responsibilities like caregiving? I can’t just suddenly drop that. These are significant points, and there’s no straight answer.
I’m now self-employed, which affords me a lot of flexibility in the energy I exert. However, it isn’t all roses and daisies. Being my own boss with a chronic illness means if I don’t work, I definitely don’t get paid. There’s no sick days, annual leave, long service, maternity leave. I can’t call in someone to fill in for me in my therapy practice. This is all a risk I choose to take. At the end of the day, we all face certain limitations in life — within those unique constraints, we all have choice.
Let’s get this clear: the problem isn’t you, the problem is living in a society that doesn’t adequately and fairly support people living with disabilities, chronic illnesses and mental health issues. I therefore don’t have a magic answer on how to balance allowing yourself sufficient recovery and continuing to uphold your life commitments. However, I will say that I was working 9–5 part-time and freelancing (while studying full-time) when I burnt out, and stayed in that job for two and a half years. During that whole period my health was either in dire straits or below average. The workplace itself was also extremely toxic, so that made things even worse.
This is a hugely privileged thing to say, but I honestly attribute a lot of my recovery to eliminating from my life the relationships, work and activities that didn’t ‘fill up my cup’. There’s a lot to be said for this (living in ‘alignment’ and honouring who we truly are), which I will write about in another blog soon.
To care for ourselves better, we need to care for others better
On top of shifting our own ways of thinking, there needs to be collective action. When we (as a society, content creator, influencer, government, culture, whatever group) spread the message that we can only truly be happy when we’re 100% well marginalises people who don’t fit that image of ‘healthy’. Standards set by ableist ideologies make life harder not just for those living with disabilities or illnesses. Those narratives of wellness hurt everyone. None of us are immune to ageing, injury, disease and everything else that makes us mortal humans. When we’re unexpectedly hit by an event or diagnosis that compromises our life, often we don’t know how to adapt.
We need to honour and listen to the wisdoms of people living with chronic illnesses — not just when we suddenly fall ill, freak out and depend on their advice, but when we’re going about our everyday lives. People living with disabilities or chronic illnesses carry a wealth of knowledge around how to be adaptable and resilient, and how to embrace living with uncertainty, ambiguity, prolonged pain, judgements from others and the reality of their own immortality.
If 2020 has taught us anything — it’s that we need to cultivate those exact skills, mindsets, qualities or whatever you’d like to call them. So, to those of you out there grappling with a new diagnosis or an old one that’s lingered for years, trust that you have far more wisdom and power than you currently know, and give yourself the chance to explore what those unique knowledges are. Perhaps you hadn’t yet been honouring them in your life, and they’re now calling out for you to stop, and listen.