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The Maze of Chronic Illness

How do you find yourself when you don’t know who you are any more?

Chronic illness was an identify thief that stole away everything that made me who I was. Without those things - who am I? If I’m not a teacher, a farmer, an adventurer, a mother- what am I? Nothing? I’m a nothing. If I can’t work or be of value, what am I worth? Nothing. This is a dark hole I started down, but I couldn’t stop. And I couldn’t see a way out.

Everything that was a part of who I was, wasn’t anymore. I had no solid ground to stand on, nor could I stand on my own two feet. I used crutches and braces and a wheelchair. I was too tired to be mad about my physical state, but I was furious about being abandoned. That only fed my beliefs that I was nothing and I was worth nothing. I truly believed that this was it. I would live my days struggling to get out of bed each day. Short of breath. Confused by simple tasks. Exhausted by the thought of a shower. My stomach rejected most foods. My joints hurt. I hurt. My heart was broken. My soul was crushed.


In the past when I failed at something, I learned from my mistakes, got up, tried again, and did better. This time I couldn’t just pick myself up. My body refused. My heart couldn’t find a reason to even try. It has been a few years now struggling with my identity; this sense of loss and betrayal. It hinders my every attempt to start over. It sabotages every relationship. At my core, whether I acknowledge it consciously or not, I am terrified of putting myself into anything or anyone. My awareness of the fragility of human connection and the capricious nature of “living one’s dream,” inhibit me from putting my heart into anything.

Something happened to budge me out of isolation and self-condemnation. I wish I could pinpoint the exact moment, so I could share with you the “magic secret” for getting out of the hole and finding yourself again. It was really a series of events that lined up perfectly while I was in the right state of mind. This was the key that prepared me for the shift. Preparing my mind, helped me open my heart.


Preparing your Mind for Finding Yourself


1. Partake in an artistic experience you enjoy a few times a week. Be present for it. Enjoy the music, the visual experience, the poetry… As an observer and experiencer – give yourself permission to explore the form or art you like as provided to you.


2. Eat a food you like every day. This was hard for me. I have a lot of GI issues and my stomach is almost always non-compliant. But hear me out… For many of us we have a strained relationship with food. Too much, too little, not the “right food.” Body image issues. Ugh! For one small portion of food a day, just enjoy the food. Whether it is a favorite fruit, a piece of chocolate, a savory morsel… whatever it is, stop everything else, really appreciate this moment with your food. No judgement, just enjoyment and appreciation for this one moment where there isn’t a strain or struggle with the food relationship. Even if it is only a single bite on a gastroparesis day.


3. Perform a micro-work of art a few times a week (daily is better for faster results). Document the art in a journal or vlog for 3 months - this is important for our future self. It could be as a simple as dancing your heart out in your kitchen, or more equipment oriented with paint and paper… but just 5-15 mins of some artistic expression. NOT TO CREATE SOMETHING BEAUTIFUL. The goal of this piece is to get what is on the inside out. Colour for 5 minutes with a black crayon. Sing at the top of your lungs in the car. Jot down a poem. Play the sauce pan drum kit. Sew some scraps of colour and texture together, adding to it every other day until it is a kaleidoscope of your emotions in fabric. Not into art? Write out sequences of numbers- but try writing the numbers in sizes to match your emotions at the moment. This is just for you to practice connecting with what you are actually feeling, then expressing it in a tangible way.

4. Lay in bed an imagine one thing in your life that you really need to be better. What would it look like for this one thing to be “better” or improved? What would it feel like if this aspect of your life was different? How would that change you? Would it make your life easier? Imagine the feeling in your body if this one thing were to change – where do you feel it the most? What is one thing you can do right now to facilitate this change – no matter how small? Do this exercise a couple minutes daily – when you wake up or just before bed.


5. Shifting thoughts and finding opportunities. A lot of days with chronic illness we dwell on the sucky parts. It’s hard not to. There is pain, nausea, so many incomplete tasks, so much to ruminate on and chastise ourselves about. This is why it is so important to write down on our calendar one happy memory of the day, every evening before bed. An accomplishment. A good moment. A connection with a friend. Whatever happy thought you have of the day – record it. I like to take photos through the day, because I am quick to forget these happy little moments otherwise. Recording them gives us something to look back on. It creates a body of work over time. When we start giving our focus to a happy memory, we are more likely to remember more similar memories – it’s like “suggested” pages on IG or FB, but in our own neural system. It strengthens the neural pathways to happiness (or at least being able to perceive moments of contentment more readily).


The more I practiced these 5 strategies, the more I found myself opening up to new experiences. Through these art/journal strategies something started to emerge; me. I was able to start seeing threads of myself appear in the songs I listened to and sang. I connected with my nephews while colouring over zoom, which gave me an opportunity to be “me.” I baked my cake (pie) and ate it too! And started to imagine the life I wanted to be living.

There are still hard days, a lot of them. Sometimes I forget to connect using the strategies above (these mindfulness and self-compassion strategies), and as these absent days add up, they feel like weights on my ankles making it so difficult to move forward. I gently remind myself, ‘I know what to do to help myself. When I help myself, I can connect in my relationships, and I can be more independent.’

We all have our own self-help strategies. What strategies are most helpful for you?

Join the conversation here, on our Facebook Group “Homesteading with a Disability, Facebook, or Instagram.


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