Employment

MY EXPERIENCE BEING DIAGNOSED WHILST IN THE WORKPLACE

 

I was diagnosed whilst in the workplace at a film production company as a project manager, I'd been working there for nearly two years and so it came as a bit of a shock to my employers when I could hardly walk (because my hips and coccyx was subluxing so much) and had to tell them I needed to work from home whilst waiting for doctors appointments for a diagnosis.

 

My role was extremely stressful and I’m sure this contributed to the deterioration of my health and my symptom flare up. During the interim period, they devised a restructure in the roles so that I was doing all the administrative project management behind the scenes, and another employee who had more recently joined took over as project manager.

 

I got my diagnosis after a few months, which was helpful in allowing the employers to understand that it's a chronic condition and that reasonable adjustments have to be made long term. My rheumatologist said that one day in the office a week was enough for me and so that became the arrangement once I was strong enough to commute in on that one day. After four months of working from home in the slightly adjusted role, they said that they wanted that role to be someone who's in the office and not working remotely, so they changed my role to editor and set me up at home with the appropriate equipment, so that I could do the role without needing to communicate too often with the office. Initially it was difficult for them to even believe me and I realise it must have been hard for them to get their heads around, especially as it had never been done before and invisible conditions are harder to understand. Over time I was fortunate that they made sufficient reasonable adjustments to my role so that I could continue working there. 

I wanted to share some of my tips and things I wish I knew before

 

CHECK ABOUT REASONABLE ADJUSTMENTS

 

Each country has their own laws about this, but in the UK I know that reasonable adjustments must be made and tested out until the employer can 'let you go' for a health condition 

 

What reasonable adjustments should an employer make? 

 

In the UK, the Equality Act 2010 requires employers to make reasonable adjustments to prevent employees from being treated less favourably than others for reasons related to their disability or progressive condition. In the US section 503 of the rehabilitation act says the same. 

 

  • Flexible hours - options such as working from home, working part-time and flexible working hours (can only be requested after working for 26 weeks)

  • Conditions; sharing tasks, reducing mental or physical task demand, more frequent breaks, slower work pace, 

  • Colleagues may have to take on extra work so for teamwork and morale it's encouraged for colleagues to be made aware of the chronic illness

EXPLAIN TO YOUR EMPLOYER ABOUT YOUR CHRONIC ILLNESS AND HOW SYMPTOMS AFFECT YOU 

 

This will help in defining the reasonable adjustments; sharing tasks, reducing task demand, flexible hours, more frequent breaks, slower work pace. 

 

To communicate this;

  • A doctors letter is useful for 'medical proof' of the invisible condition 

  • You may want to put together a little one pager about your symptoms, how they may affect your role and what solutions or reasonable adjustments can be made for each one  - template below for you to fill out

 

TO HELP WITH ANXIETIES AROUND COMMUNICATING TO YOUR EMPLOYER AND COLLEAGUES ABOUT YOUR DIAGNOSIS 

Being diagnosed and then talking to your colleagues and employers about it all can be quite overwhelming and I know it made me quite anxious as I wanted to explain myself to everyone and the reasons for not being able to do things suddenly - I found cCBT helpful for changing my mindset around this and getting used to the diagnosis. 

WORKING FROM HOME IS OFTEN BEST FOR PEOPLE WITH CHRONIC ILLNESS FOR SO MANY REASONS 

 

Issues with in office working:

  • the commute (~2 hours of the day can take up a lot of spoons) - especially if it’s in a city where it’s hard to get a seat

  • needing to rest/nap during the day due to extreme fatigue

  • mobility issues moving around the office if mobility is an issue / only sometimes an issue depending on the day 

  • lack of self-care (in my experience I’d be so exhausted after a full day in the office that I couldn’t cook dinner, look after myself properly let alone daily chores around my house)

  • neglection of daily management essentials like finding the time for managing overall symptoms and pain levels, physiotherapy and eating well 

 

 

Because of the global pandemic so employers will now realise that they CAN function whilst employees working remotely.

My employers weren't a fan of the remote working at first and it wasn't the easiest process getting them to understand why, so I hope these suggestions can make it easier for you

What has your experience been with chronic illness and diagnosis in the workplace? Or have you got symptoms and suspected disgnosis but awaiting appointments? I'd love to hear from you, please get in touch

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Chronic illness insights, tips & resources