The Blog

On Working With Chronic Illness(es)

Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved...

Four months ago I thought I'd never be able to work again.

I have had one chronic illness my whole life, but last year became even more of a challenge when I was diagnosed with two more. The oldie, Ehlers-Danlos Syndrome (a connective tissue disorder which leads to constant dislocation and subluxations - which I have written more about for HuffPostUK), was joined by Postural Orthostatic Tachycardia Syndrome (POTS) - an autonomic condition that made me come close to passing out every time I moved, and left me unable to eat two bites of a banana without feeling like I was going to die and requiring at least 4 hours in bed to recover. Most recently I have been diagnosed with Mast Cell Activation Disorder.

Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved, and even stop working on my own business because I just couldn't cope. I didn't know what to do, and the more and more I read, the more desperate I became. I was 24, and the vast majority of people I spoke to seemed to perpetuate this negative cycle of not being well enough to really achieve much. That's not to say that there aren't some fantastic blogs that talk about how they have got through, but some of the biggest forums (especially on Facebook) with thousands of people with the same condition sharing how bad things are, actually made me feel worse every time.

Unfortunately, the traditional working system is not set up to support people who have chronic illnesses. Apart from frequent bouts of brain fog, my brain functions perfectly well, and I know that I am an extremely capable person. I'm lucky to have achieved and experienced some incredible things already, but with these new illnesses it felt like it was just too much to push through now, and that my life (even though I had fought through chronic pain my whole life) was pretty much over.

I knew that would be an asset to whoever I worked for and should still be able to try and live the life I wanted...but how? As I focus on healing, or when I have particularly bad flare-ups, I just need to work from my bed, at the strangest hours of the day, so I can spend the rest of the time languishing. I'm an expert languisher. But last year, all I could think was 'who would want someone who is this ill? I can't be of any benefit to anyone like this. Businesses don't care. I'm never going to be able to work again. Great.'

This year, I have decided to really focus on my physical and mental health, and am completely overhauling my lifestyle in the hope that I can get these illnesses under control - particularly focussing on food, exercise and (so far failed attempts) at meditation. I'm lucky that this year I am working in two places that completely understand my situation. Funnily enough, neither of these jobs are things I thought I'd be doing only two months's strange how things just happen sometimes.

If I feel up to going into the office, I go into the office, but otherwise I work from home. I strongly believe that just so long as the work gets done, it doesn't matter how or where it gets done. I've worked in several offices where I have literally had nothing to do for most of the day - what's the point in just being there? I can do the same from home and be more productive and produce better work.

Many businesses are stuck in the traditional mindset that 'you must be in the office' to be able to work for them. But with technology being as amazing as it is these days, it's such an antiquated attitude to have. Work gets emailed, Skype calls can be had as often as necessary, all work can be shared and saved instantly through Dropbox, notes can be collaborated on through Google Docs and Evernote. The internet is a godsend for those with chronic illnesses, who need to be given the support to be able to build careers. That support really isn't there. I don't need the government workshops telling me how to apply for jobs, or general work support. I'm more than capable of working on my own career - I know what I want, what I'm capable of, and what I want to achieve. The problem is with the business community in general - all too often stuck in their ways, perhaps scared to branch out into a new way of working. For one of the places I'm working this year, the working entirely flexibly from home is an entirely new thing. They've never done it before, but they are being incredibly supportive and communicative, which has made the whole experience so much easier for me.

Trust me, transitioning back to work after spending half a year in bed, unable to do anything is strange. And I'll be honest, right now, my stamina is still rebuilding. But, I'm now able to work the best part of the week . Even though, for example, last week I was particularly suffering with some side effects from new medications, I was able to get all my work done. Yes, it meant that I had to work 5 minutes on, half an hour (at least) off on occasion, but I got my work done, and I was proud of myself. At 25 you shouldn't feel like you're not able to contribute to society because of illnesses you have no control over.

For people with chronic illnesses, I would say that trying to stay away from those groups that perpetuate a negative 'all is lost' attitude is key. Find people and resources online where people are fighting and living their lives to the fullest. If you find someone you're particularly inspired by, email them! I try to share the ups and downs of everything that is happening, but focussing on what you can do to make things better is so important. Yes, there will be times when your health bottoms out, but it's how you think about it and how you deal with it that helps you push through to get to your normal.

There is always something that you can do, and it might take a while to find out what that is, or it might change ten times, but there will be places out there that can help, whether that is working for yourself, someone understanding, or something else. I spent years hiding what was wrong with me, and when things got bad people didn't believe how ill I was: "but you don't look sick" is the phrase I hate most in the world).

This year I was totally honest from the beginning and laid out the situation and what I would need. If they didn't want me, they didn't want me. That's fair enough, and their loss. Luckily, they did, and after what was quite possibly the worst year of my life, I'm working my arse off to get back to where I know I can be. I know my life isn't going to be the same as people who are well, but I have goals and dreams (wow, I can smell the cheese as I write this) and things that I want to achieve, and I'm not going to let my body stand in my way.

You can follow my journey at