Don't tell me you hope I 'get well soon'
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Living with an invisible illness
At the end of 2010, my life changed forever. I was constantly sick at work. It was my sinus, my throat, my chest, and my ears.
I worked in a 24-hour call centre, and people used to come in and spray for bugs while we were sitting at our cubicles. I thought I must have been reacting to an ingredient in the spray.
When I got tonsillitis for the third time and antibiotics no longer worked, I was put on steroids and the doctor recommended total bed rest. I had to hand in my notice and look for a job with better hours.
I’ll never forget the subsequent job interview. The interviewers were so lovely. I sat there sweating in my black business suit, with dark, sick, puffy eyes I’d been unable to mask with foundation and concealer.
“Tell us your favourite joke!” they asked.
My head was thumping and swimming.
“Uhmmm, uhmmm.” (Great, I not only looked like an extra from The Walking Dead, I also sounded like one.)
The job entailed attending networking drinks with prospective clients and company nights out on the town, one interviewer said. Would I be up to going out and socialising the odd weeknight?
“Yes,” I croaked.
They seemed genuinely disappointed I’d failed the interview. I was too, but if I were them, I wouldn’t have hired a walking cadaver either. Never mind, I thought. Next time.
Except there wasn’t to be a next time. Instead, there were more visits to the doctor and specialists. Hospital, tests, medication, steroids. All the while, my hard-earned savings dwindled away.
Finally, a diagnosis, of sorts. I was told I had an immune system disorder, and that I might get better, or I might always have to manage the symptoms.
I cried. I saw my future plans disappearing just as my savings eventually had. Moving overseas to be with my boyfriend, landing my dream job; it was not to be.
But there was always a glimmer of hope. Every time I tried a new medication, I thought it might be the silver bullet. Many different diets, health supplements and exercise regimes later, it was so hard to let go of the dream of a full recovery.
Especially when sometimes I would feel healthy for weeks at a time. I’d think, “This is it! I’m finally better,” only to suffer a health decline that would then drag on for months.
Work and Income New Zealand (Winz) don’t like mystery chronic illnesses. They like explainable things that fit into easy little categories. I was able to work part time, at least. I did as much as I could, when I could. But I’d still get called in for the inevitable meetings.
One Winz case manager told me, “I’ve got an immune disorder and I still manage to hold down a full-time job.” Perhaps she misunderstood that “immune disorder” is an extremely vague diagnosis, and not all disorders are created equal.
“There are plenty of jobs online that you could do from your laptop at home."
“Where are they?” I asked, having already scoured job websites and finding nothing other than “Make money from home” pyramid-type schemes.
“It’s not my job to find them for you,” she said.
I managed to complete a diploma at home through online study, which I could do from my laptop in bed if I was going through a particularly bad health decline. It’s not in my nature to just do nothing.
But when I recently opened the envelope holding my diploma, I thought I’d feel pride at having worked despite adversity to get it. Instead I felt crushing depression. I realised that I’d looked at getting my diploma as something worthwhile to take up time while I was “getting better”. In the back of my mind, I’d been sure that when I finally got it, I’d be fully well.
It’s exactly six years now since I started getting symptoms and despite trying so hard to get better, despite small victories and progresses, I’m not cured. I have stopped saying, “When I get better".
Well-meaning people still say, “Get well soon,” and I am touched. But for me, “soon” was too long ago.
In a way, I am better. I was forced to make some healthy changes to my stressful life. I realised that money isn’t everything, and you can’t put a price on your health or on the love of friends and family. I found out who was really going to be there for me and stay there when the chips were down. I learned never to take anything for granted; every pain-free day, every hug, every kind gesture, every good thing that has ever happened to me.
It's hard to live in a society where your worth is determined by employment, how much you earn and how much you contribute to the world.
Chronically ill people can feel left on the sidelines, like we’ve been cast as background characters in our own life stories. It would be wonderful to live in a world where we felt valued for who we are, not just what we can or can’t do.
But until then it’s important to look on the bright side, even if some days you have to look really hard to find it.
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