Back to work after illness – can I ever be ready?

Today I officially start back at work, after more than two months of being signed off. That time started with being diagnosed with an underactive thyroid – autoimmune hypothyroidism.

  • fatigue, exhaustion
  • feeling run down and sluggish
  • depression
  • difficulty concentrating, brain fog
  • unexplained or excessive weight gain
  • dry, coarse and/or itchy skin
  • dry, coarse and/or thinning hair
  • feeling cold, especially in the extremities
  • constipation,
  • muscle cramps
  • increased menstrual flow, more frequent periods, infertility/miscarriage

When I look at the list of symptoms now, it all makes sense – but it’s one of those things that at the time you are going through it, maybe makes no sense at all, especially with an existing disability that gets blamed for a lot. I knew I didn’t feel right but I didn’t know why. I also have chronic hives, and have done for a year now – no-one is very clear on why, but this can also be a sign of an underlying health problem such as thyroid problems or lupus.

So when I was given a reason for the way I was feeling (although still no reason for the hives as such) – well, I felt relief but I also felt panic. I didn’t know anything about autoimmune hypothyroidism. I didn’t know how long it would take me to feel better, or even if I would feel better… it’s been a steep learning curve for me.

It was even less obvious to the people that I work with. Things had been going downhill at work for a while before I got a diagnosis. In fact, in work terms, I was lucky that I got a diagnosis when I did or I probably wouldn’t have a job to go back to. As soon as I was able to give a reason for the way I had been behaving, the somewhat hostile atmosphere changed to something completely different – partly supportive, partly pity and partly ‘get her the hell out of here before she screws anything else up’ with an added dose of DOOM for extra measure.

At the time, I didn’t have the energy to care about it really. All I wanted to do was sleep.

Now I have been taking thyroxine for a while, and I am ‘ready’ to start getting back to work. Ready in the sense that I can stay awake and concentrate much longer than I could. But maybe not so ready in other ways.

It’s a bit like going back to work after maternity leave, except that in that situation there are many other people that understand what that’s like. The underlying feeling this time seems to be a bit different. It’s not that I am returning with another small person to care for – which many people succesfully juggle with work – but instead that I am returning with an additional diagnosis to add to the original Ehlers Danlos Syndrome. Something that was already causing concern anyway, despite my reassurance (and supporting previous work record) that I have always had it, I have always coped with it, and I have always been able to attend work and work to a high standard.

I don’t think my mandatory visit to Occupational Health – to assess how and when I should return to work – has helped the way I’m feeling. When I was being asked about what had been happening, I was presented with the question ‘and how long have you been off work this time?’

When I questioned what ‘this time’ means, I was told it meant ‘this total period of consecutive sickness’ (that’s paraphrased, but it’s what was said).

So because I have EDS, I must have had several periods of sickness? Actually, this is the first time I have EVER been signed off sick in my life. 20 years of working – and this one period of long term sickness, which has nothing to do with EDS. Which I said, and which earned me a slightly incredulous look. There seems to be a perception that because I have a disability, I must be off sick a lot. I must be unable to cope. I must be less able to work than other people.

I am less able, yes. But with the right adjustments I can work just as well as anyone else. My brain isn’t broken. I can get to work with wonky legs. I am used to the pain. I have spent a lifetime learning coping strategies, and they work for me. Having autoimmune hypothyroidism is something new to add into the mix, but it is entirely treatable and there is no reason why I wouldn’t go back to being my normal, slightly wonky, able to work self. Despite that, the Occupational Health report stated that ‘I continue to struggle with my underlying condition’. Even though I wasn’t aware I was struggling in the first place, and I made that clear.

I feel now that it will be hard to regain any trust, and that people will always be looking at me differently. I feel like it is unnecessary for people to tell me – on the occasions when I have been in touch – how much of a mess I left things in, and how much time it took to sort them out. Is that helpful? To tell me how useless I was? How useless I am perceived to be? Are people who are off sick for other reasons made to feel like that? In my experience, it’s best wishes, and get well soon cards, and flowers. Not ‘look at this mess you’ve made’ like it’s something I should have known was going to happen.

I have never had a problem with people knowing about my disability. But I do have a problem with feeling ready to return to work when it feels like work will never be ready for me.

I really hope I get proved wrong.



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