Friday 26 June 2015

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.

Wednesday 17 June 2015


If you've been following my blog for a while, you've probably seen me mention my hypermobility & problems with my left knee either dislocating or subluxating. I've had this for a while and doctors have either brushed it off, or given me simple strengthening exercises to do that have proven pretty useless.

I'd learnt about Ehlers Danlos Syndrome (hypermobility type) from friends with it, and they agreed I probably have it too. The more I read up on the symptoms, assessed (and reassessed, and re-re-assessed!) myself with the Beighton score, the more I thought I really could have it. I spoke to doctors about it, but they held misconceptions about the condition & believed that it always had to run in families & always had to be very severe. My hypermobility wasn't considered *enough* to warrant diagnosis, & the other symptoms were attributed to my Fibromyalgia (regardless of the fact that I told them I'd had this before the fibro symptoms started).

Last month (after some dislocations that were a lot harder to put back in) I decided to speak to the GP again about my knee, & tell her that it had been getting worse. She referred me to the Orthopaedic Clinical Assessment Service at a local hospital. I had my appointment yesterday (15th) & saw a Specialist Physiotherapist. As I knew I'd be examined too, I made sure that I mentioned problems with my other joints that I've had for years, and also things in the past that I thought could be connected (My jaw used to dislocate when I was a young teen. I was referred to a Maxillofacial doctor who sent me for an Xray, but my jaw was back in place at the time so nothing was found! I also have very flexible ankles that like to give way suddenly, and I used to sprain my ankles and wrists very easily).

After a few questions (medical history, family history, medication, previous investigations or physio etc) the physiotherapist asked to examine me. I was embarrassed about getting my (extremely pale, veiny, bruised, scarred, stretch marked) legs out, but of course he needed to see for himself what was going on. He got me to stand up and push my knees back as far as they can comfortably go. He also asked me to lie on the bed, bend and stretch out each leg so he could examine my joints, muscle strength etc (so many examinations, I couldn't explain them fully!) I'd mentioned my hips being very loose too, so he examined them.

As he moved my legs about to check for problems, my knees and hips let out so many very loud cracks! A particularly impressive one from my right hip had him jumping a mile! I couldn't help but laugh when I saw his face. He could actually feel my hips and knees popping out then going back in. Constantly clicking joints & extra bendiness is my "normal" though, I suppose. Until I heard about hypermobility, I just assumed everyone was like this!

The appointment went much better than I expected! I went in, just expecting to be told my knee was a bit weak or something, but I barely had to explain anything as, when I was examined, the Physio suddenly piped up "Has your GP ever diagnosed you with Hypermobility Syndrome?".

I explained about my problems with getting doctors to believe me, & how I'd tried the Beighton test a few times. He got me to do that test again, and nodded along as I showed him. The final part of that test is to see if your palms touch the floor when you stand up and try to touch your toes. Thankfully my back wasn't too bad that day, so I was able to attempt that. With legs together, I could get my fingertips on the floor but no further. He asked me to put my legs slightly apart and try again. That time, my palms did touch the floor (just). As my legs were apart though, I'm not sure if that counts. He didn't say what my score was, but I'm guessing it must've been high.

Finally, he asked me to walk for a few steps (without my stick), so he could see if there were any problems with my gait etc. Thankfully that was the last task, as I was dizzy, exhausted, overheated, in lots of pain, and basically needed to sit down!

He concluded that I did have Hypermobility Syndrome (he didn't say EDS hypermobility type specifically but I think this is considered the same thing?) my left kneecap dislocates, he noticed my hips were quite loose & that I tend to walk with my toes facing inwards; which is what could be causing my knee problems. He also said that surgery on my knee was an option, but he wouldn't recommend it as, because I was hypermobile, it could make things worse. He is referring me for a long programme of Physiotherapy & if needed afterwards, I could be re-referred to him & may need to have special insoles to help with my walking.

So I guess I'm an "official" Bendy now! It really felt so good to be believed & to actually have symptoms show, rather than everything being based on what I say! The physio is writing a letter to my GP with the diagnosis, his findings etc. I'm sure I'll be blogging about my experiences with this physiotherapy programme too.

I do want to speak to my GP again pretty soon, as I've had some horrible pain flare ups recently & today I was doubled over. I should've rang, but surgery was closed by the time I realised I needed to ask for pain relief. I'm not even sure what meds could be suggested! Management is important, but I really do need to have something to take as needed (at least!) for the severe pain. I can't see how I could effectively manage my symptoms when the pain restricts me so much & causes me to flare up so easily. Maybe this latest diagnosis will help her to see this?

I should add some sort of About Me page to this blog, but here are my diagnoses for now:

- Fibromyalgia
- Hypermobility Syndrome (EDS?)
- Irritable Bowel Syndrome
- Overactive Bladder Syndrome
- Clinical Depression
- Generalised Anxiety Disorder
- Obsessive Compulsive Disorder
- Agoraphobia
- Social Anxiety

Phew! I think that's enough for me to cope with. I don't want anything else, thanks!