Read: 'Stop Apologising': What those of us living with chronic illness need to remember
It’s time to talk about it.
I rolled out of bed one Sunday morning and made it as far as the hallway before my whole world started to swirl and I was falling. Logic tells you that once you reach the floor the falling should stop. Even though I knew I was lying on the floor, my stomach kept lurching. I frantically tried to grasp at something, anything to stop the sensation. It didn’t work.
And so began the last five years of my life living with Migraine Associated Vertigo – basically instead of getting the pounding headache we normally associate with migraines, you get – I get – vertigo. The problem is that lying in the dark, going to sleep and waking up the next morning doesn’t fix this type of migraine. I spent months lying in bed 24/7 feeling like I was falling. Every sound, every movement, every turning on of the light – made it worse.
There was no alternative.
I had to take serious medication and begin the ascent back up to being able to stand millimeter by millimeter, month by month. And here’s the thing: as difficult as the physical experience is, beneath the surface there is a much bigger game unfolding. One nobody talks about. It’s your emotional free-fall and the ways you are trying to hold it all together inside.
Like millions of women living with chronic illness and invisible illness, I’ve had to navigate not only the physical condition, treatment, drugs and side effects, but also the really hard stuff. Like trying to manage my career, deflecting the unhelpful ‘helpful advice’, creating some badass boundaries in all my relationships. Plus the heartbreaking stuff like missing my best friend’s wedding.
So what do you do with all these feelings and circumstances? How do you find a way through?
Learning to live with chronic illness is a work in progress. Here are the most important lessons I've learned:
There is No Shame in illness
One of the most difficult things about living with illness is feeling ashamed.
I’ve felt the shame of living with a body that is not 'functional' or 'healthy' even though I look 'good’.
The shame of being naked, poked and prodded and feeling like a 'problem' for clinicians to solve. Even apologising for experiencing serious side effects from the medication meant help me. Plus being so emotionally distressed that quite honestly I felt like I was going mad. And while all of these circumstances are difficult, it is the shame that overwhelms you.
Fundamentally this shame is cultural because illness is seen as a ‘bad thing’ that often gets translated into: if you are not well, it’s you who is bad. Plus unconsciously family, friends and colleagues can reinforce this by wanting you to be the ‘good’ patient, to see you trying hard, extremely hard to get well.
So let’s be very clear, There is No Shame in Illness.
You did not ‘do’ anything wrong. You did not ‘think’ anything wrong. And you are not to blame for the experience your body (a biological organism designed to break down) is having. Remember you are having an extremely difficult experience and it is perfectly natural to feel overwhelmed, grief and in struggle. Learning to identify and release any shame may not improve your physical symptoms but will certainly support your emotional wellbeing.
You don’t need to apologise for being unwell
Ever noticed yourself apologising for being unwell? Ever tracked how often you do this in one day? Be prepared for it being way more than you realise. What happens when we habitually apologise for all the things we can’t do is that we start to shrink inside and feel a sense of despair and even hopelessness.
So, here’s what I do instead – I talk about my Circle of Wellness.
Your Circle of Wellness is all the things you can do on any given day. Some days I can make a phone call (even if it's just one from my to-do list), some days I can work from bed, and other days, like today, I can sit propped up on my couch tapping out these words to you. Like many women living with chronic illness my capacity on any given day fluctuates radically. So I have trained myself to understand that my Circle of Wellness can expand or contract. When my capacity is limited it is not a failing on my part, it is simply the nature of living with chronic illness.
Your Circle of Wellness becomes the foundation of your communication with others. At work and at home I talk to others about what I can do, and when they ask me to do something that I can’t do – I simply say “I don’t have the capacity to do that, I can do this…”. It’s a starting place so that the next time you find yourself about to apologise, pause. Think about what you can do and speak from that place. Especially if today is a day that you need to take care of yourself by resting in bed. Honour the reality because you do not need to apologise for it.
You can have meaningful work
One of the biggest lies about chronic illness is that somehow you don’t deserve to work in a way that works for your body. For so many years, I felt like chronic illness was a major obstacle to having the career I dreamed of.
The world is set up for ‘working hard’ and being ‘busy’ (if not frantic). And while the conversation culturally is slowly changing, it is still the norm for most workplaces. This creates enormous pressure for those of us living with chronic illness. We feel like we can’t work or don’t fit in. But that is not the end of the story. You can have meaningful work, and you can do it in a way that works for you and your body.
Well the first step is to acknowledge that you have incredible skills and value to share with the world. Then consider if there were no rules, how could you share your talents in a way that works for you? What would be the first step?
For myself, I spent many years working part-time for the Department of Health while living with chronic illness. While I am great at writing policy and negotiating, I knew that it drained my energy and was not going to be sustainable. So I listened to my longings, to the things which made me feel energised. I loved facilitating and sharing from my heart, so I started to run women’s circles in my apartment. This meant I could share my gifts and control my environment. I ran weekend retreats in my apartment. Eventually I discovered that all this material could be effectively shared online, I could work from bed and at the times that worked for me.
I know an American songwriter and author Sarah Ramey who lives with extreme chronic pain. She was bed bound for two years and all she could do was write lyrics in her mind. But she focused on that and slowly as her capacity increased, she recorded an album. Did she go to a studio and belt it all out in one mammoth effort? No. She hired a colleague and they recorded for one hour a week, for months until the album was birthed.
I don’t know the longings that are in your heart but I do know that they are there for a reason. They are your compass. There is a way for you to bring them into reality that also works for your body.
So beware of the shame, don’t listen to it. Speak up from your Circle of Wellness and take the one small step that you can towards your dreams.