My Invisible Life- Living With Sickle Cell: Hello World, from my Hospital Bed
Chantelle is a 23 year old woman who lives with sickle cell in Bradford and London. She is writing a series of blogs for the Sickle Cell Society to make her invisible life more visible.
Note: This passage was written when I was kept in hospital for two weeks following a Sickle Cell crisis.
As personal as the following is, I’ve wanted to do this for a while but got put off thinking “no one will be interested”, “they won’t understand” etc, etc. I’ve come to realise that this isn’t true and if people aren’t interested or don’t understand it’s because there’s a lack of awareness.
I’m just your average northern girl now living down south. I also happen to have Sickle Cell (SC) – a blood disorder in which my red cells are shaped differently to the average persons. A quick Google search will tell you about the excruciating pain this can cause and what sufferers do to keep it under control. What isn’t so easy to find is the effects that having to deal with SC daily can have on sufferers, as well as all the other rubbish we have to deal with as a result.
There is so much I want to write but to kick-start this blog I’m going to focus on giving you an idea of my current state of mind as I write this from my hospital bed.
Frustration – my life has been put on hold through no choice of my own. I moved south in August 2016 and travelled back north in mid-October to celebrate mine and my mum’s birthdays. Instead, I ended up in hospital with an SC Crisis. I’ve been living Groundhog Day ever since as I’m still in 13 days later (my longest ever stay).
Worry – new job. My employers know my situation; I’ve been upfront from the start. But I’ve not even been there three months and I’m still on probation! I’m worried my bosses will think me being hospitalised will be a regular occurrence and not keep me on past my probation period.
Guilt – for being away from work so soon after starting and for so long. It’s a small company and my absence means my colleagues are having to take on my huge workload that I know they could do without.
Boredom – I WANT TO GO HOME!!! Ok, so I can’t because of the complications the crisis has caused in my leg, but my mobility and the infection it caused is improving. At the end of the day though, I have a life to live and I want to live it!
So, there you have it. I needed to vent and tell the world that SC is about more than just the pain. It’s the psychological damage it can cause too. The above are just some of the emotions I am feeling right now, and have felt in the past – no doubt other sufferers have too. But trust me, there’s plenty more! SC is a misunderstood and complex condition that is the most common blood disorder in the UK (so I’ve read…).
Be sure to subscribe, there’ll be regular updates on not only on my situation but on SC itself. I want to make SC recognised as the debilitating condition that it is but also make it known that we are strong people who don’t want to let it beat us.
‘Til next time x