"You're relatively independent aren't you?" was a question put to me recently by an online friend. A question I didn't really know how to answer and one I'm not sure time to reflect has helped.
Sure, I live independently. Sort of anyway. It would be more accurate to say I live alone, require large amounts of support and have learnt to make the best of life without that support. But what does it really mean? Another friend's comments this weekend provided that answer. Roland, phoning to check I was safe and well after travelling alone in the BendyVan commented how glad he was, not just that I now have a car I can drive without immediately dislocating all my major joints, but that I'm well enough to be making the most of it at the moment.
Roland's right, I am relatively well at the moment. But this weekend highlighted just what level of independant functioning my relatively well means, and how challenging it is to translate that relative wellness into practical day to day life, let alone work.
When we start dating someone new, we all want to impress them, to show them our good points and hope that by the time our less good points start to emerge that that person likes us sufficiently to focus on the good rather than the bad. It's a bit like starting a new job, we're all keen to impress and prove our suitability for the role. For me, disability is a huge stumbling block to both those situations. Being sick, disabled and without diagnosis impacted hugely on all my personal relationships and ability to work. It would probably be fair to say that whilst employer's make it clear that it's a problem for them, when it comes to relationships it's a far bigger deal for me than it is for many of the partners I've had, but there it sits, firmly on my shoulder, whispering dark thoughts into my ear about how hard it makes life, how much it impacts on everything, and creates additional burdens simply not there when not yet sick or disabled people form relationships.
Can the person who cares about me cope when I dislocate, fall or stop breathing? Can they deal with seeing someone they love in agonising pain without any ability to help? Will they be prepared to support me financially if we ever wanted to live together or marry? Time limiting contribution based Employment Support Allowance will make that a pressing question for many couples, for those where the working partner is low waged it will prove impossible to form permanent, stable relationships with a sick or disabled person as the financial responsibility is to be passed to the partner from the state.
But really, it all comes down to can they cope with the day to day reality of chronic sickness and disability? In just over 24 hours this weekend I needed to ask for help to reduce dislocations in my thumbs, my shoulders, my hips and my pelvis. I needed to be helped off the floor many times, to be helped from sofa to door, to be brought food and drinks, to have morphine dispensed to me. I needed valium fetching after my pelvis was reduced and the consequent muscle spasms shook my entire lower half. I needed the comforting hand placed on my leg to reassure and console as I fought off tears. I needed help when I accidentally brushed my hand against my neck getting dry and my airway collapsed. I needed medication bringing urgently, and monitoring while I fought to gain control of my breathing. I needed someone there to make the decision about whether or not to phone an ambulance, to be able to explain to paramedics and the hospital what, if anything they could do. I needed help to shower, quite the comedy event with a small, slippery, wet bendy person liable to fall in dry, non slip conditions. I needed to be told when I'd clearly pushed myself too far and had to lie down.
That isn't a bad day, or me being unwell. That's me about as good as it gets. Issues which are challenging enough in a home based, personal environment where no-one has to worry about health and safety or the impact on anyone but the two people involved in that relationship. In a home environment, whilst it's difficult it can all become a natural part of that relationship, just another way in which partners support each other.
But, requiring that level of support in a workplace is not so easy. And remember...this is as good as it gets. Would you employ someone who is guaranteed to dislocate on a regular basis, fall over on a regular basis, vomit on a regular basis and highly likely to stop breathing on your premises......?
Really, would you? Because I wouldn't.