A year ago I was diagnosed with Hashimoto’s disease, an autoimmune condition that is slowly destroying my thyroid. It’s been an interesting year. I found a fantastic doctor who is proactive and holistic; I started a regime of medication and supplements that are slowing the destruction of my thyroid, replacing the hormones my body can’t produce, and supporting my brain, heart, and bone health; I built my swimming sessions back up to 3km and returned to a regular yoga practice; I lost 18 kilos; friends and family delighted in my renewed health and vitality; and I kicked some pretty major professional goals.
I’ve also done a lot of psychological “work”. Being diagnosed with an autoimmune condition has brought up some serious “stuff” and I’ve had to reflect, process, accept, and let go. Along the way I’ve also realised there’s a lot that no-one tells you about chronic illness, both good and bad, and I thought these things were worth sharing. So here are my Top 8 Things No-one Tells You About Chronic Illness (or, Ice-Cream For Breakfast):
(1) You will not be a superhero. I always assumed that if I got cancer or lost a limb I’d be that amazingly resilient person who embraces life, trains for the Paralympics, starts doing all the things on their bucket list, and never ever feels sorry for themselves. But I think I’ve just seen too many movies. Sure, nine days out of ten I am resilient. I kick arse at my job, I spend time with friends, I volunteer, I swim and do yoga, and I seek out the things that bring me joy. But the tenth day. Oh the tenth day. That’s the day when I take off the cape, stop wearing my undies on the outside, and become human again. I rage at my useless body, feel guilty because my body is actually pretty amazing, cry because it’s so unfair, feel guilty because it’s not unfair at all, and wonder whether anyone else ever feels like this. They do (even the Paralympians) and it’s totally normal.
(2) Your family and friends will not understand. Of course they will be concerned and compassionate, but the only people who truly understand are people living with the same chronic illness. I’ve been fortunate to have the support of a wonderful friend and colleague, SW, who simply responds with “Yes” when I tell her that life sucks. SW also has Hashimoto’s disease. She doesn’t try to fix my problems, or refer me to a faith healer, or change the subject. She simply offers empathy, gives me space to rage, and helps me laugh at the inanity of it all. If I could bottle her, I would!
(3) Doctors will only be interested in your body; you will have to take responsibility for your mind. There is a profound psychological shift that comes with chronic illness – a shift in who you thought you were and how you thought your life would go – and that shift is accompanied by the awful (but incredibly valuable) realisation that your life and your body are largely out of your control. But your doctor (no matter how awesome he or she is) won’t tell you this and isn’t particularly interested in how you cope with it. So seek out other sources of support – a psychologist (preferably one trained in Acceptance & Commitment Therapy), yoga, meditation – whatever it takes to reach a place of acceptance.
(4) You will eat ice-cream for breakfast. I eat well, I exercise, I don’t drink alcohol or caffeinated coffee, I don’t smoke or do drugs, and my body still has days when it struggles. So I persist with eating well, exercising, and avoiding nasties because I want to work with my body, not against it. But once or twice a year I will eat ice-cream for breakfast. Just because I can.
(5) You will learn to ask for what you need. The vast majority of the time I don’t need help carrying potting mix up the stairs and I’m more than happy to stand for the duration of the train commute. Unfortunately, on the occasions that I need a hand or a seat, no-one offers because I look young and healthy (it’s a curse, I know!). But it’s okay because I have a brain and a voice and it’s amazing how generous people can be when you ask for what you need.
(6) You will come to truly appreciate the little things. Sunshine, bare hands in warm soil, a great meal, the laughter of small children, and that tremble in your thigh when you finally nail ardha chandrasana at yoga. When life hands me lemons, I don’t make lemonade. I run my fingers over the waxy skin, hold them up to my nose to inhale the delicate fragrance, and juggle them on one leg to make my nephews laugh.
(7) You will learn to say no. When it’s said with kindness and compassion, no is the most beautiful word in the English language. It helps you protect your ‘me time’, prevents you from over-committing, and encourages others to do the same.
(8) You will become a better person. There’s nothing like a bit of drama in your own life to make you more empathetic to drama in the lives of others. As a result of my own journey, I’m now much more supportive when students, colleagues, and friends are going through tough times. But just in case I forget, I’ve put a sticky note next to my computer that says “Be kind, for everyone you meet is fighting a battle you know nothing about”.