When I read the article mentioned above, the first three words hit me like a truck. Pain is exhausting. Truly and utterly exhausting. I can't remember the last time that I had a pain-free day, or when I last had a day that didn't end with exhaustion - and actually this is just so normal for me that I hadn't even realised! If you haven't come across the Spoons Theory by the lovely Christine Miserandino as a way for explaining what it's like living with a chronic health condition, I strongly recommend that you check it out.
Anybody who runs a business will tell you that it too can - at times - be absolutely exhausting. It's also very empowering - you can set your own work schedule, make up your own rules, work within your limits, and this is ultimately how I came to run my own business. My (then undiagnosed) disability became unmanageable in an inflexible organisation like the National Health Service (yes, ironic, I know!). Looking back, it was the best decision I ever made to leave full time employment.
Being disabled in business
As I continued reading the article, I started to realise that I almost 'wall off' my disability from my business world - very few people in my business networks have any idea of the challenges I face on a daily basis, in fact I take a typically British view and 'just get on with it' - using splints and braces (and the most recent exciting development of corsets!) to allow me to stand for longer periods, and pain killers and TENS machines if it's a particularly bad day, and attempting to master this ever-elusive thing that people keep talking about called 'pacing' (I'm really not so good at that one!). [For those who don't know, I have Hypermobile Ehlers-Danlos Syndrome]
Not only do I have the mammoth task of running a business, but also contending with the exhaustion of pain - knowing every day I wake up there will be a 'snap crackle and pop' as my partner puts it, while my joints put themselves back in place. Knowing pretty much every night some part of me will be really painful. The often frustrating inability to stand for longer than around 20 minutes before being in the kind of pain you might experience if you sprain an ankle or twist your knee - in just about every joint of my body - with wobbly joints making life just that little bit more interesting!
There comes a time, however, when you realise that actually that's starting to do more harm than good. Just getting on with it and trying to keep smiling isn't going to get me anywhere fast. In fact, it's starting to have a detrimental effect on both my enjoyment of my life, and my ability to really engage with my business, clients and friends.
At some level, I haven't been willing to accept that it's actually OK to be an entrepreneur and a business owner, and not being able to be 'normal' and do 'normal' stuff - it's something I've been fighting against quite ferociously over the past three years, being restricted by my disability. Not being able to stand up to talk to people, or walk around at an exhibition for me has so far been something of a frustration - an annoyance that was at some level also a sign of weakness. In business, we don't like weaknesses - but perhaps I need to start turning towards those weaknesses instead of pushing them away, and see them as one of my strengths.
Just recently I've started realising how much I've been missing out on because subconsciously my mind just says "yeah, you can't do that so don't even try!" - things like going to a museum with friends, spending the day wandering around the shops, going to an exhibition and walking around meeting stand holders (you may not notice, but every conference I attend I spend 90% of the time sitting down, rarely get involved in late night socials, and if I am speaking longer than 30 minutes I always have a chair or seat). I'm really fed up, in fact, with being limited by my disability. So, I'm fighting back, by accepting that there are some things I can't do, but that if I asked for a bit of help, I might actually be able to do!
So, you might well see me in the future with some help .. maybe crutches or braces, maybe a wheelchair, maybe not. It depends whether I'm having a good day, whether I can cope, and how easy I can get around without assistance. Don't be alarmed, it's just me trying to get on with running my business and enjoying my life in whatever way I can :)
