Past Experiences of Working Whilst Sick & Disabled

I became ill with Fibromyalgia in my 2nd year of university. My first blog post gives a bit of background as to when, how it started, experiences with doctors etc

As I got more ill, I struggled more with getting to lectures, but still wanted to take on work. I didn't know anything about chronic illnesses & was hoping that this would be a short term thing that could be fixed, so I could get on with my life. I think I thought I could push through it too.

After a lot of searching, I got a job at a jewellery store. I was undiagnosed at the time, but doctors were considering hyperthyroidism, as I had high TSH. My T4 was normal however, so this result wasn't seen as significant enough.  I didn't declare my illness at first because I wasn't diagnosed. I thought that I wouldn't be taken seriously, as I would only be able to say "I've had X symptoms" rather than "I've been diagnosed with X". I had to call in sick a few times, and tried to explain what was going on but found that my illnesses were ignored. I was treated as if I was skiving off work. The truth was that every time I went into work, I was in considerable amounts of pain, I was extremely dizzy, nauseous & exhausted (even before I started my shift!). I tried my absolute hardest to push down all these symptoms though, because I worried about losing my job. I didn't know my rights when it came to work. I didn't know a thing about disability discrimination either.
       I was on a 2 month probation with this job. Because I was ill so often, I was frequently threatened with the sack. The attitude I received from my boss (and some colleagues) was horrible. I didn't feel I could confide in anyone & it really felt as if they were trying to push me out. I quit in the end. It wasn't worth risking my health for; especially as I was struggling with my university course as well.

After graduating, I got a temporary agency job with a debt management company (never again would I work for a company like that). At the time, I had been diagnosed with M.E. I didn't declare my diagnosis until the first time I had to phone in sick. The way it worked with that company was, even if you'd only had the one day off, you had to meet with a person from the agency at a certain time to explain why you'd been off. I explained about my illness & recent diagnosis, but can't remember it being considered much. I didn't know anything about reasonable adjustments, & wasn't sure what sorts of adjustments would actually help my illnesses/disabilities. The place had decent chairs and lifts (so equipment wasn't a problem as such). It was the pain, fatigue, dizziness & nausea that affected my work. Having an overactive bladder (although not diagnosed at that time) also made meetings very difficult to concentrate in. In the end, I got the sack for not hitting targets (the productivity targets were ridiculous, & increased every week. After being in that particular department for one month, I was expected to be at the same level as someone who'd worked there for years!).

The next job was one I enjoyed the most. I worked through an agency, as an oncology research assistant. I realised that I was struggling, but I wanted this job so much that I forced myself to carry on anyway. I found some members of staff understanding, others not so much. My manager encouraged me to take days off when she noticed I was feeling more ill, but I felt that she didn't have faith in me as an employee & I knew that she wouldn't want to extend my temporary contract. I wish I could've done better, but my illness was getting worse & I just wasn't able to be at my best.

My last job was a short temporary one (direct with employer this time though!). I found I was treated as part of the team, but my illnesses were again mostly forgotten/ignored, until they noticed that my productivity had gone down. I did explain what was going on, and they listened a bit more then (even asking if I needed reasonable adjustments) but again, I didn't know what to ask for.

I wish there were more information/advice/guides about reasonable adjustments. It seems that people are expected to know what to ask for (when it comes to disability accommodations in the workplace) & they have to self advocate. Dealing with long term illnesses and disabilities (treatment, management, appointments etc) is difficult enough, & takes up enough energy, so can you imagine how exhausting/daunting having to self advocate is, on top of all that?!

More workplaces need to be understanding, & knowledgeable about disability & the kinds of reasonable adjustments that could be needed. It should be made easier to ask for adjustments. There needs to be clearer information available, & it needs to feel like a collaboration, not a confrontation.