Chronic illness: ‘I’m not freaking depressed’ by JOANNA BANGS
To wake up in the morning without pain or stiffness would be amazing. To leap out of bed and be excited about the day, that would be terrific.
I live with fibromyalgia, Myofacial Pain Syndrome and arthritis. I’m 52 this year, am a mum and grand mother and am ready to live the next phase of my life with enthusiasm. But living with an invisible illness has it’s own set of problems.
I’m a people person, I love conversation, am a brilliant cook, am funny and hospitable, enjoy gatherings and am interested in lots of things including art, and gardening, and worm farming. The problem with all this is that I’m a normal person with normal desires and normal goals … until fibromyalgia flares up and I’m cast down with pain, fatigue, IBS. My joints don’t want to hold me up or work to do a simple thing like pour hot water into a cup, I experience sensory overload.
When I’m not ill, I love music and can go shopping, go in the traffic. When I’m not well I have full-on panic attacks, can’t handle the lighting or noise in the malls, need to wear sunglasses otherwise I have an immediate headache. I can’t think fast enough when I’m like this, which in itself brings on panic attacks. Yet I look so well.
I went to Workbridge to see if I could get a job that suited me. I thought that an organisation geared up to helping disabled people to get suitable work would be able to help but apart from doing my CV the only help I got is to be sent a few full time positions by email that I should apply for. One of them a receptionist position that starts at 6am and finishes at 7pm then starts again at 7am the next day. When I explained the reasons why this was not suitable and that I wasn’t wanting to set myself up for failure I got the silent treatment.
I don’t feel conventional employers are going to look at me, and needed a hand to get in the door as I have awesome skills. I’m a fabulous customer service person, have brilliant listening/communications skills but can only work 15 hours a week or I lose my benefit.
I decided to work with Lifeline. I did the training, loved it. I flew through the assignments, made heaps friends and just loved it until I flared up with arthritis and fibromyalgia and couldn’t get up the stairs. Actually getting up was a mission, but getting down the stairs is dangerous when all the ligaments around your knees and ankles are inflamed and either stretch too much or not at all
Hyper-extension is not something you want as your going down stairs. And when I’m flaring like this it’s not that much fun to drive either, because of sensory overload and also intense motion sickness when the car stops. It’s very weird but until I got fibromyalgia, I never had an issue with motion sickness.
As soon as I mention fibromyalgia or chronic illness, depression comes up. Even yesterday a friend I haven’t seen for ages asked “have they thought of depression diagnosis?”
I’m not freaking depressed. I’m suffering from a chronic invisible illness. I’ve done a ton of therapy around grief and around personal loss and loss of potential. I worked through it and now have a plan around retraining and working as a nutritionist. I start study in June and am looking forward to it
At the end of two years I have several opportunities open to me but I have to be careful choosing which way I go because I don’t want to set myself up for failure. I’m confident that with the people skills I have. I have a place in this world.