My own number one supporter.
Shannon Jade lives hopefully with Ehlers Danlos Syndrome, Scoliosis, and autoimmune disease. She talks us through her habits for prioritising support… for herself.
The internet is teeming with suggestions of self-care in the form of DIY avocado facials, fruit-filled water bottles and carefully curated Spotify playlists. This stuff has its place, but the real lessons lie underneath the coffee-scrub hubbub.
In a word, my journey with disability and illness has been unpredictable. Coordinating medical appointments and tolerating treatments can feel like a full-time job, and life in a body that sometimes struggles with simple tasks can be a challenge. Like many young patients, I have often struggled with my lack of medical control, but as I’ve gotten older, I’ve come to understand that there is one thing I’m the boss of: me.
While my doctors focus on my medical needs, it’s my responsibility to give my body the extra love and care it needs as together we fight the chronic illness battle.
With chronic illness and disability, self-care is at once more simple and more complicated than a bottle of kombucha and a spot of retail therapy. In the depths of a painful flare, self-care can mean taking time-out to rest and recover.
Self-care can also be taking a dose of medication, or attending a frightening appointment, or calling a friend and asking for help when you need it.
When illness and disability threaten to steal your identity, self-care is what you use to take back your sense of self, heading out for a well-deserved day of fun or doing something creative that makes you feel inspired.
Here are some of my top tips for super-charged self-support:
Simple, right? The world is go, go, go! When medical appointments, work tasks, school or uni assignments, overfull social media inboxes, and family responsibilities start to feel overwhelming, I take a step back and just sit. Rest time gives much more clarity (and energy!) when I return to busy life.
Reflect on something simple and joyous from your day.
Stop for a quiet, peaceful lunch outside, away from social media distractions.
Try a meditation app (like Headspace!).
Negative and defeatist self-talk is a one-way ticket to struggle town. I try to reframe the way I speak about my health and myself. When I begin to treat myself with kindness, self-care becomes much easier, and medical management isn’t hindered by my poor self-worth.
Choose one thing you love about yourself, and focus on this when you’re feeling low.
Give yourself a daily compliment! You’re awesome; shout about it!
Think of yourself as you would a best friend and adjust your self-talk accordingly.
Planning is the name of the chronic illness and disability game. Remember that self-care is an important part of health care. I make plans for relieving pain (heat pack, anyone?), taking medicines, attending events, resting, and catching up with friends.
Put together a pain survival kit. Fill it with pain relief tools and fun things to distract you.
Use a bullet journal, calendar or digital planner to keep track of medical needs.
Make time to call, text or catch up with at least one friend each week.