I Didn't Want to Be Defined By My Illness


Trying to hold a professional job with a chronic illness feels like some kind of torture. Add in to the mix a couple of kids under 5 (one with special needs), and it’s just hard.

Why did I do it? Because I loved my job! I’ve worked in marketing roles for over 10 years and I’ve found so much joy working on so many different projects. I’ve met life-long friends and mentors who I still go to for advice or a laugh. I’ve had dreams of being a marketing manager of a big team of skilled professionals. Of coming up with that one brilliant idea that made the company millions. Or simply just being happy with the day-to-day grind of working in a job that pushed me to be my best me.

But those dreams aren’t likely to be realized. Because I have psoriatic arthritis. It’s an autoimmune disease that many don’t know much about (including my doctors), and some days it floors me. I’m not going to carry on about the pain, fatigue, injections, pain killers or medicines that make me feel worse than the pain does. Many of you know about this stuff first hand. I’m not into comparing, but I am also acutely aware that there are so many out there doing it tougher than me.

And I have managed my illness, my job and my kids thus far (albeit barely). But over the course of six months the pain in my back has been untouched by the meds. I developed nerve pain in my leg that became unbearable, and after a couple of falls, I found myself in the hospital.

The involuntary muscle twitching was scary. The talk of multiple sclerosis and motor neuron disease was terrifying. But after a heap of tests, a giant bag of expensive new medications and the promise of physical therapy and a rheumatology review, I was sent home. No answers. Nothing to tell my family or work. And without the ability to carry on with my normal life. The single most horrifying thing about this whole experience was the thought of letting my family down.

I’ve had to resign from my job. My kids are still in daycare three days a week, which we will struggle to pay for – but they need it. I can’t care for them and myself for five days a week. And suddenly I am at home. Alone. And scared.

I’ve always shirked the title of “sick.” I was never going to be defined by my illness. But here I am, like so many others, in a life that my illness has decided for me. I’m not doing fun runs for charity with my friends, or smashing my key performance indicators at work or running around the park for hours with my children. I’m on the couch with my blanket and my heat bag wondering how we’re going to pay the bills.

Who am I without my job? I love being a mum, but I’m not even doing that well right now. And although I didn’t want to be defined by illness, I was happy to be defined by my job. So now what?

After some soul searching I’ve decided the only thing that will define me is my attitude. I will embrace my new life and I will be positive.

Positive I love my kids and my husband.

Positive that I have a wonderful support system.

And positive I am not going to give up!

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: KatarzynaBialasiewicz


Find this story helpful? Share it with someone you care about.


Related to Psoriatic Arthritis

Woman resting. Oil painting.

What I Wish People Understood About Disability and Chronic Pain

There is nothing wrong with having a disability. I know because I have one. I have arthritis all over my body, I also have fibromyalgia and chronic fatigue and I am not ashamed of it. It is what it is, I can’t do anything about it, so why stress and worry about it? Yes it [...]
trees covered in snow at night in morocco

How Psoriatic Arthritis Led to a Downward Spiral in My Self-Esteem

One of my favorite visuals in life is that of the domino toppling. To me, there is just something so satisfying about seeing them fall like that. The idea that someone can set something up so perfectly that it can be torn apart so beautifully has a strange appeal to me. Especially considering the fact [...]
elegant woman dressed in black hiding with umbrella in a misty landscape

To Those of Us With Chronic Illness Who Say 'I'm OK' When We're Not

How are you today? OK? All right? Fine? But what if you’re not OK today? Would you feel as comfortable replying to that question with “Actually, I’m pretty down today, I had a terrible night’s sleep filled with pain and I’m on the verge of tears?” Probably not. I’m guilty of simply replying “all right” every [...]
woman giving presentation on her 'reason for being'

How My Journey as a Patient Has Come 'Full Circle' With My Career

Have you ever had one of those dreams where you’re trying as hard as you can to run away but you can’t seem to break out of slow motion or are simply stuck in your tracks? I have. Except for me, it wasn’t a dream – it was my life. Five years ago, I was [...]