The Invisible Life of a Maverick Bluestocking

Today in the Spiritual Badass community we are invited to write about invisible illnesses. The questions are:

1) How does Invisible Illness affect your life and your business, whether it’s yours or someone in your family’s?

OR

2) How do you balance acknowledging Invisible Illness while still staying positive and not making your whole entire life about your disability?

I think this post will answer parts of both of the questions.

My life is, in fact, full of invisible illnesses. My mother lives with Multiple Sclerosis. Although the physical effects such as weakness in limbs can be visible, this condition typically brings with it all sorts of pain and discomfort as well as overwhelming fatigue. All of those things are invisible. If someone looking at my mother thinks that her MS means she can’t walk very well, they are missing about 90% of what she lives with.

The amazing thing about my wonderful mother is that she has used her MS as a vehicle for spiritual growth. Through it she has learned a degree of acceptance that most of us, thankfully, never have to acquire. She is incredibly calm and has become a fantastic listener, even though before she became ill she was always busy and often didn’t sit down much at all. She delights in the simple things in life, such as watching the birds in her garden, and never, ever, ever complains. I am lucky and privileged to have her example to learn from.

I am also a parent to someone with mental health issues. I don’t write much about this because I try not to encroach on someone else’s personal story. There are still far too many taboos surrounding mental health and it is hard to get the appropriate support. Teenagers, in particular, are too often dismissed as lazy or badly behaved when in fact they are suffering badly. A recent tragedy very close to home for us has reminded me – as if I needed reminding – how serious the suffering of young people can become.

My view is that the answer is not always to talk, to try to fix things. I believe in meeting people where they are, acknowledging their experience as real and valid, in movement and fresh air if they can bear it. Also in the healing power of music and other creative activities and the incredible medicine that is connecting with animals. And nothing, but nothing, beats love. Try and tell the doctors all that though!

Then there is my own invisible illness. I have struggled with a lack of energy for many years and in 2011 I was diagnosed with Chronic Fatigue Syndrome. I declined the offer of treatment from the NHS consultant who told me squarely that I should never expect to get better. Instead I embarked on my own journey, incorporating both specialist help and my own spiritual meanderings. I learned to eat properly, in a way that suits me, and to listen to my own body so that I exercise when I can and when I can’t, well, I do less.

Life isn’t easy when you never have any extra energy. I rarely do. Everything is an effort, although towards evening I tend to feel better. When I can exercise – hard – I always feel much better. I can’t stand it when people say, ‘oh, yes, I always feel tired too,’ because fatigue is not just tiredness, and Chronic Fatigue or ME come with a range of symptoms including all sorts of pain and the dreaded ‘brain fog.’

I have learned to be grateful for the condition I am currently living with, though. I thought that it was a terrible thing when I realised I could no longer manage to be employed in a ‘proper’ job while caring for my son and my mother and dealing with my own health. Sometimes I still feel irritated that I can’t do as much as other people appear to do. I can’t manage long days and travelling takes a lot out of me. But this condition has given me wonderful guidance.

Because of the limitations I have just described, I have fallen back on my writing and have become more and more creative and have grown in ways that I could never have imagined. Because I rely more than some people on social media for my connectedness I have a wonderful circle of like minded contacts from around the globe. Because I learned to meditate in order to support my health I am now becoming a meditation teacher which feels like coming home.

And more than this. I don’t go out of my home for hours every day, returning exhausted to cook, flop in front of the TV and sleep before going out to work again. I live in my home. I have my dog and my closest family nearby throughout the day. I follow my heart and my creative instincts so every day is an adventure. I listen to my body and I have learned so much about self care that I delight in passing on my wisdom to others. How could it get better than this?