Having a chronic illness doesn’t mean I can’t have a life. Two years ago I had an operation to have my large bowel removed after a nasty bout of ulcerative colitis (an inflammatory bowel disease). I lived with a stoma bag for a year. I also had an operation months later to stitch me back together – surgeons sewed my small intestine to my rectum to allow me to go to the toilet ‘normally again’. Except, the operation hasn’t worked out quite the way my surgeon had hoped and life has been pretty difficult ever since.
Just to give you an idea of how the operation has affected my life – and sorry to be so personal – I can use the toilet up to ten times a day. This is because there’s no large bowel to slow the process down. With this comes horrendous stomach cramps, and often blood and mucus. Because of my symptoms, I have to work from home.
I often feel guilty about it, wondering what people think of me or whether they feel I’m ‘faking it’ because I don’t look sick. That’s a problem in itself – the fact people still believe that you have to be physically ill for it to be unwell. (Picture: Ella Byworth for Metro.co.uk) But that’s an issue we’ve already discussed many a time. What I want to get across to people now is that having a chronic illness doesn’t stop you having a life.
A large part of my worry in regards to people judging me for working from home comes when I actually do feel well enough to go out. That’s when I feel like people are judging me. I feel like a fake myself. But then I remember that when you live with a chronic illness, there are both good days and bad. And they rotate back and forth so frequently that it makes it difficult to really commit to something – though don’t get me wrong, I always give things my best shot.
MORE: HEALTH Is your whey protein shake causing your acne? My nervous breakdown ruined my career – here’s why I’m OK with it These are the five most addictive substances in the world Some days I can get through most of the day away from the bathroom, anxiety-free and remember what it’s like to have fun. Other days I’m chained to the toilet. It’s a reality I’ve grown accustomed to, but of course, it’s a reality that not everyone realises.
They often make comments on my day-to-day life as if missing out on things is a choice – all because they tend to only see the ‘good days’. (Picture: Ella Byworth for Metro.co.uk) ‘But you went on holiday last week, why can’t you travel into work every day?’ is something I was asked when I went away just recently for the first time in two years. I had a wonderful time. It was amazing. But being away doesn’t miraculously stop your symptoms.
There were some days where I had to miss out on what everyone else on the holiday was doing. And the anxiety during the long-haul flights was overwhelming. It’s become such an issue that for an entire year after my operation I rarely posted any photos of my life to social media in fear people thought I was taking the piss. Newsflash, people: You don’t have to live in isolation to be sick. Part of having a chronic illness is also, often, having an invisible illness – or disability, if you will. According to Papworth Trust, there are around 11.9 million people living with disability in the UK.
That’s almost one in five people and includes everything from physical to mental health. Imagine if every one of those stopped doing things like going out and spending time with family and friends, going on holidays and attempting to live their lives the best they can, just because their chronic illness stopped them from doing other things.
(Picture: Ella Byworth for Metro.co.uk) That’d be one in five people living in isolation and the fear of judgement. And is that how we want so many to feel? MORE: HEALTH Mum investigated over child abuse after her baby sucked his own arm Mum wakes up from coma ‘thinking she’s 13’ Disgusting moment a doctor pops massive cyst on woman’s chest The bottom line is, having a chronic illness does not make me undeserving of living a normal life. Not being able to go into work every day does not mean I can’t leave my house.
Not being able to attend plans due to having a bad day does not mean I can’t plan anything else in the future. Having an invisible illness does not mean I have to make myself invisible, too. The sooner we start encouraging people with invisible illness to live their lives to the fullest, the sooner they will stop feeling as isolated from the world as having an invisible illness already makes them feel.