The impact of disability and ill-health can feel wide reaching within a family, with the stress, emotional uncertainty and pressure often leading to a spreading those impacted. This can make the whole situation more difficult to cope with and lead to a bit of a landslide impact as to how a family manages. Here we talk about how one family has experienced first hand this impact and how things need to change to provide better support.
From the minute you are aware that a loved one has a serious health issue it is impossible not to be impacted. The emotional roller coaster can last years and even good news is always precusored with the stress of wondering what the appointment will entail and what will be said.
We are one of the lucky ones. Things have not turned out anyway nearly as bad as we were told they could be, but all of our health has suffered along the way and continues to suffer.
I think the most difficult aspect has been dealing with a child who did not sleep well for over three years. Three years of being woken twice per night at a minimum. Having to get out of bed, calm another individual, often then having to shuffle rooms to accommodate a child who will only then sleep whilst ‘hugging. You can then try to get back to sleep once you’re certain your new bed mate is asleep and with the art of a ninja you can slowly move away without detection to whatever fraction of the bed has been left.
I think my partner and I have spent more time in separate beds than we have together. We have given up the hope of a good night sleep and rationed that it makes more sense to at least have only one of us (significantly) disturbed and the other can then do the morning shift.
Three years of sleep deprivation takes its toll. I would challenge any healthy individual to set their alarm for two wake ups per night every night, leaving them room and having a conversation for 20 minutes or so (or even trying another chore like the laundry) each time and then getting up for the day at 6 to stay healthy. Sleep deprivation is a recognised form of torture and having experienced it, you can see why.
I was the first to succumb. I found I just couldn’t cope anymore. Sheer exhaustion took over me to the point I just couldn’t function. Not in the things were a bit hard sense, but in the each and every day I just couldn’t get out of bed. At all. This was actually as the health of our child was starting to improve and there was light at the end of the tunnel – things weren’t as bad predicted after all.
With hindsight I think I was suffering from some sort of stress reaction – from the emotional stress of the original health challenges to the ongoing physical stress of surviving on so little sleep for so long. Be that PTSD (Post Traumatic Stress Disorder) or Adrenal Fatigue, who knows, but it was bad.
Luckily, my wonderful partner picked up the slack. He did the nights and then the days and then the nights again. He made sure that the house was clean, the children were fed, washed and happy.
But then I started to improve and it was if the baton had been past to him in terms of ill health. He suddenly didn’t need to be quite so strong as I was able to do more and he hit a wall. He was broken – suffering from an exhaustion that no amount of sleep seems to fix. Currently he’s usually in bed by 8 every evening and still needs to sleep for 4 hours during the day. There is no sign of him feeling better yet. The doctors have prescribed anti-depressants in case they help, but it’s early days and we are so far in the cautioned ‘it’ll get worse before it gets better’ stage.
It has made us realise how poor the support is for those impacted by disability and ill health. There is no time off work for ‘someone else has a problem sleeping and it kept me up’. There is no paid leave for ‘I’m dealing with stuff and so just need a bit more downtime than usual – can we double my holiday entitlement’. There isn’t even a consideration of the sheer number of appointments we need to attend to challenge – ‘do we really need to drag this family across town or could we just talk to them on the phone?’.
We were offered a psychologist the day after we had the original diagnosis for our son back. We said no – we had never been the kinds of people to need this help and couldn’t imagine it would benefit. We were also still in shock and didn’t know what we do now. We haven’t been offered any kind of support since.
This needs to change and is one of things enablie wants to help with by giving others the courage to speak up and educuating others so that both friends and businesses can be more understanding and supportive. People need to know that it’s OK to ask for help too even though they are meant to be being strong for someone else who has it worse. It doesn’t make their contribution any less valuable. The health system needs to recognise the burden it puts on people and think about channels that work for the individual rather than a one size fits all approach of regular face to face checks. Companies need to have guidelines on what people need (even when putting on a brave face) so that they don’t lose their best employees. It’s going to be a slow journey to get the change needed, but at least we’ve started!