Working Through Chronic Illness
For me, work is one of the most important areas to be running smoothly in my life. It costs me an enormous amount to work, but not in money – I pay in pain, energy levels, and stress. It means not being able to have trips out. It means if I have a family wedding I need to take not just the day off – but days surrounding it to recover. It means an extremely limited social life. And this means I want the payoff to be worth it.
I have had numerous issues in the work place over my disability which are often caused by a simple lack of understanding. Sometimes a lack of understanding of my illness, and sometimes quite simply of the law.
My first job was while I was at Sixth Form College, and it was at DFS, a sofa company. The job involved filling out the finance forms for customers after they had purchased a sofa and assisting customers by answering questions about the stock.
My back constantly hurt, and standing was the biggest culprit for causing even more pain. I took the job on the understanding that we were able to sit down when we weren’t serving a customer. Unfortunately, the manager had other ideas, and demanded we continually keep walking in circles around the store – even when there wasn’t a customer in sight. I have to describe the act of walking around with pain shooting across my back and down my legs, while surrounded by comfortable sofas, as something akin to torture. I was desperate for customers to come in, so I could snatch a few blissful moments on a sofa while I took their details.
I had absolutely no idea of my rights, and had never heard of the Disability Discrimination Act (now the Equality Act 2010). Not to mention I would never have dreamed of calling myself disabled at that age. I worried if I complained or was caught sitting down, I’d be fired. One day I was phoned to say they didn’t need any casual staff any more, but when I contacted the other staff – found I was the only one who had got this message. I assume in the end, the manager got fed up with me hobbling around, regularly collapsing into seat when I was unable to bare it any longer. Not that I could prove it.
My second job was at a tourist information office. It was fast paced, and my fellow colleagues were sympathetic, and took on the physical jobs, while I in return did more computer based work. But yet again I ran into trouble with my manager. I had told her about my pain condition, and learning from my previous mistake, had carefully detailed what I could and couldn’t do upfront in the interview and was thrilled to still get the job. Yet she couldn’t grasp why it was difficult for me to do certain jobs, and seemed to take an attitude I was just being lazy. She would purposefully pick me out to do physical jobs, while everyone seemed to look the other way.
After university, I was unemployed for some months. While the JobCentre agreed I could only work up to four days, with no standing, or heavy lifting, they began to get difficult about it. They sent me jobs for things I couldn’t do saying I had to apply for it, even if I physically couldn’t do it. One of the jobs was sorting Christmas mail at Royal Mail, another clearing a shop floor. I was told I had no choice but to apply, or I’d be sanctioned.
Job Centre Plus (Photo credit: Wikipedia)
I’d been sending out application after application with no response. I had even made an appointment with the Disability Adviser, hoping for some tailored advice, but instead just said “just continue with what you’re doing.” Some employers I applied for operated the Two Ticks scheme, which works around the basis that if someone ticks
they are disabled and they meet the essential job criteria – they have to offer them an interview, although having applied for a number of these jobs and not heard anything back at all, I’m not sure how it works in practice.
I do think this is a great idea however. I don’t believe it gives people with a disabilities an advantage, as some feel. Instead it’s the combat the very common attitude of employers dismissing disabled people right away – feeling they’ll be off sick a lot, or will be nothing but trouble. The scheme does not guarantee you a job, but allows one small barrier to be broken down and give the employer the opportunity to meet the applicant, and see their skills and work ethic before deciding whether to dismiss them or not. The Depressed Moose details some more issues with the Two Ticks Scheme here.
It’s also a very difficult decision whether to tick it or not. I applied for a job covering a maternity leave at a university and got an interview. In the interview I was asked whether or not I needed any adjustments, and I explained the restrictions. I was then offered the job, but in the conversation the head of the department asked what my disability was. I can’t remember what I said (I didn’t have the diagnosis then), but fatigue must have been mentioned, as her tone changed as she asked if I had “one of those chronic fatigue type things”. I said no, but fatigue comes into it. She then practically withdrew the job offer, saying she was worried I couldn’t do the job, and they had no time to find anyone else if I took it and then quit. I said I could do it, and she ended the phone call saying she needed to think about it.
What she did was very wrong. First of all she had no right to ask me what my disability was – other than as she had done before in regards to adjustments. She also had no right to withdraw the job offer purely based on my disability.
She rang back the next day and said the job offer was conditional on me seeing their occupational health, which was fair enough. I was cleared. It turned out her husband was severely disabled, and she was very understanding with me and was a good manager. But she could have faced legal action on the basis of her reaction. My line manager then went on to say I picked the job up quicker than anyone she’d ever seen, and was always commenting on how efficient I was, which they wouldn’t have seen if they’d chosen to allow a symptom of fatigue to cloud their decision.
Some parts of the job not mentioned in the job description got more difficult for me. It was advertised as an office job, but it actually involved a lot of physical activity. Most of the people in the office were understanding, and some took on a few minor tasks I couldn’t do. One junior manager took umbrage at this, and made the atmosphere unpleasant to the point of him ending up being disciplined for his behaviour towards me. The same junior manager also extremely offended someone visiting an office by declaring dyslexia didn’t exist, and people were simply lazy. It turned out the visitor had dyslexia and got very upset and explained that it was nothing to do with laziness, but processes in the brain, not that the manager took any notice.
Finally, I found an understanding manager in my third job, who is sadly leaving today and the charity I work for is being taken over by another one. My manager had previously lived with chronic pain herself, she understood sick leave, being able to only work on certain days and made allowances for me to work from home. This has led to some minor grumblings within the team, and the idea I was getting special treatment.
What I try and explain to people is that some people need additional help in order to be equal with everyone else. When someone is at a disadvantage, providing additional support isn’t favourable treatment, it’s helping them to reach the same level as everyone else.
Sadly, not everyone sees it that way.
It’s incredibly difficult to find an employer that will take people on with my multitudes of health problems. One bright side is that the Equality Act 2010 has given additional rights to disabled people that may help in some ways, such as not being able to carry out pre-employment medical questionnaires, or ask about a disability up front. Yet employers continue to do it. It’s also difficult to hide visible disabilities, like going into an interview with a walking stick.
The difficulties I have had make me worry even more for all the people being taken off Incapacity Benefit and assessed for Employment and Support Allowance, but instead being declared fit to work. Some even find themselves turned away at the JobCentre, as they’re declared not fit for work!
All I can suggest is keeping an eye on your rights, and fighting for them when you can.