The road to self-care: looking after yourself through chronic illness

I remember the beginning of this journey in an unusual amount of detail. I was wearing flat brown loafers and a little polka dot skirt. My red lipstick was applied haphazardly and smudged from the microphone that I had been using earlier that night. It all started on Brighton beach. Being a touring musician at the time, my bandmates and I were taking a post-show wander when a stranger threw a rock (intended for the sea) which hit me full force between the eyes. In particularly dramatic fashion I screamed, cried and vomited. Eventually I got back in the van and went home, thinking the worst was over. Five days later I collapsed and was taken to hospital.

After multiple blood tests and scans I was booked in for emergency surgery. The operation was successful, but a severe hormonal imbalance, brought to the surface by my blow to the head, meant that I’d developed two autoimmune disorders. The doctors told me about some of the symptoms I could expect – extreme chronic pain, sight deterioration, tremors, muscle cramps and inability to eat and how they would worsen under stress.

“I was a woman, in my early twenties, who had just received some life altering news, but I wasn’t going to let that news define me”

I was shocked and scared, but I made a choice, I would begin to care for myself. I didn’t know exactly what that meant, but I knew it had to happen. I was a woman, in my early twenties, who had just received some life altering news, but I wasn’t going to let that news define me.

I came up with a plan that I would stick to religiously. I changed the way I ate and exercised. I read furiously and wrote constantly. I learned to deal with the physical pain by focusing on making things. Over the course of two years I was able to do a little more each week, and with the help and support of my loved ones I began to feel healthy again. My symptoms were under control and I could do just as much, and even maybe more, than before my diagnosis. It felt as though I’d won my own war – there was a time when I couldn’t walk by myself and now I seemed to be physically thriving.

But throughout my recovery, I completely ignored how I felt mentally. Physical illness can be so vast that all your time can be spent simply trying to feel better and to get on with things. In an attempt to feel well, I wasn’t letting myself feel anything else.

“Deep down I felt guilty, ashamed and less of a woman because I couldn’t get better the way I wanted to”

I threw myself back into what seemed like a new life. During the next year I got married, moved house and changed job, as well as keeping up my previous routine and level of productivity. There were weeks where I felt like I was slipping back into illness, but I ignored my body. Deep down I felt guilty, ashamed and less of a woman because I couldn’t get better the way I wanted to. I’d watched members of my family fight their way out of illness with what seemed like sheer determination, and I felt lacking for not being able to do the same.

Of course, I relapsed. For around six months I was in and out of hospital, under investigation and in treatment. At my lowest, I wondered why I couldn’t take care of myself. The answer was obvious – I’d been doing it wrong from the beginning. I’d not taken the time to have a real look at myself and ask what it was I actually needed.

“I’ve now learned that true self care can’t begin without self acceptance”

A physically healthy lifestyle and a good level of productivity are necessities for all of us, but if we ignore how we feel emotionally, then being fit and able will never serve us. I’ve now learned that true self care can’t begin without self acceptance, and I had not accepted my illness. As soon as I realised that, the only way I could move forward was to accept that these disorders were a part of me and that they always would be. It was about remembering that there may be times when I feel fantastic, for example, but feeling fantastic doesn’t necessarily negate that I have a chronic illness. The more familiar this idea became, the better I felt about it. I began to understand that it didn’t take anything away from who I was – it only added.

Equipped with this new attitude, I’m back on the road of self care. This time, however, I’m taking a different approach. I’ve started by being kinder to myself. Every morning in front of the bathroom mirror I transform into my own hype woman, telling myself all the things I need to hear and reminding myself of my own worth. I’ve discovered that, during bouts of severe pain, painting magically reduces the soreness in my bones. I let my husband hold me and care for me when I’m at my lowest. I have adventures with friends. When I feel well enough, I travel. I make things when I have something to say. I hug my cat. All these experiences have led me to a level of self care and worth that I wouldn’t have if I hadn’t become unwell.

There are times when the road to self care seems too steep and exhausting, but there will always be something for us to hold on to. I’ve learned that when things become overwhelming it’s important to keep moving, but it’s even more important to move at your own pace. It’s vital to know that any step we take, large or small, is enough.