Hidden Disabilities

The trouble with fibromyalgia is when it comes to my health I have some hard borders, and if I don’t respect those borders my health begins to deteriorate. I must admit I don’t love always having to listen to and respect my body, I wish it just functioned without needing constant maintenance. I find health noise quite draining, so it’s something I am still learning to live with and accept. Recently I had to make the very hard decision to walk away from my swim teaching job. Initially I hoped that the sharp pain running down my arm and my weakened hand grip would right itself with a little bit of rest. However, after several months of distracting arm pain and scans that showed significant inflammation, I accepted there wasn’t going to be a short cut to my return to better health and in time a return to the pool.

The trouble with fibromyalgia is my world can often feel small and confined. There is nothing I hate more than hours, turning into days, turning into weeks where I spend a good portion of my time lying on the couch watching telly. It’s important to me and good for my mental health when I am able to participate and contribute to something meaningful. There were many things that attracted me to swim teaching. It was self paced learning, water was a pain free environment, it had flexible hours and it was working with kids and their families; I love kids. For the past two years it’s been ideal; one and a half hours a week teaching toddlers to swim. It may sound small given the time spent doing this, but psychologically it was hugely beneficial. I was a valued member of a team, I was contributing to something outside of my world of home, church and family.

I have a hidden disability. On the outside I look able bodied and healthy; there’s nothing obvious to suggest a reduced capacity of any kind. Like many health conditions there is a huge spectrum of function and experience. In a society that celebrates physical strength, beautiful healthy and capable bodies, I confess I’ve subconsciously internalised these idols and consequently have wanted to hide my evidence to the contrary. I never saw myself as someone who had a hidden disability until recently. When I articulated to my Osteopath some of the everyday things I mentally wrestle with, the things I find challenging to do that no one sees, and expect myself to do more than is reasonable for me she said, “that’s because you live with a hidden disability.” This for me has been helpful, as it promotes self-compassion, and while I cannot claim to be anything more, I can allow myself some kind consideration. What’s more, as a woman of faith how can I possibly live in contradiction to the truth that I am uniquely and wonderfully made by a loving creator God who loves me just as I am, and who sees me. I don’t need to be embarrassed about what I can and can’t do, nobody should feel like that. It’s not good for me and it’s not good for others.

Fibromyalgia is complex. If it took me years to get a diagnosis and then to understand what it meant, it’s no wonder others who haven’t lived this find it hard to comprehend what it means to live with it. I have found it helpful to describe pain like the bodies alarm system; and I have a very sensitive one. There was a time when I pushed myself through pain, railing against its existence and to be truthful there are some days I’ve needed to do that in order to meet the needs of the people who rely on me the most…my children. Having lived with pain for a long time I became adept at ignoring the alarm system and masking my agony. I minimised my experience as I’d given up trying to understand what had triggered it, and I felt helpless to turn it off. I have since come to appreciate that bodies don’t lie, they have a beautiful unique way of speaking. The skill is to attune your listening, for sometimes the bodies voice comes in hushed tones, but whatever the volume one cannot ignore it. Our bodies are worthy of care and attention!

I was recently given a card which said, “Ask yourself what is really important to you and then have the courage to build your life around the answer.” I want to create a way of life that allows me to flourish within the parameters of this diagnosis. I confess there have been times where I have wondered what life would be like if I didn’t have chronic pain. I’ve coming to appreciate that God can use all things for his glory and my good. Because of pain I am more reliant on God that on myself, I am more compassionate towards others who suffer and can see and therefore encourage in a way I couldn’t beforehand, and equally so, I am more compassionate towards myself. I was worried that my giving up swim teaching was just another discouraging reminder that my body lets me down. I was also worried about how my kids, my daughters in particular viewed me. My worries were surprisingly contradicted. My daughter very kindly said, “Mum you’re a great example to me. You haven’t failed at all.” I achieved what I set out to do; to learn a new skill - how to teach swimming and then to become a swim teacher. It didn’t come easily, but I stuck at it and it was really good for a season. We are only given one body and one life. So courage sometimes looks like choosing to let go of something good in order for you to do the things that you’ve decided are best.