Working with ME/CFS – Examples of Workplace Adjustments

pippa sat on bed, wearing comfy clothes, with laptop propped up on her crossed legs. pippa has long brown hair down and is smiling

Before we jump into this post, it feels really important to emphasise that by no means is everybody with ME/CFS is well enough to pursue employment, nor should they be expected to. I also know first-hand just how difficult it can be to find accessible employment opportunities in the first place.

However, as one of the self-named in-betweeners living with the challenges of a debilitating chronic illness whilst trying to lead an independent and fulfilling life, I think it’s important that we share as much information on this topic as we possibly can. For a bit of background, you can read more about my personal experiences with employment and becoming a chronically ill freelancer here!

If you’re new to the world of employment, or you’re returning to work after a period of ill health, you might find it helpful to know your rights as a chronically ill employee – namely, the workplace adjustments (often referred to as ‘reasonable adjustments’) you’re entitled to. In a nutshell, reasonable adjustments are modifications designed to overcome the challenges that disabled employees face. If you have ME/CFS, your employer is obligated to make reasonable adjustments under the 2010 Equality Act.

Some workplace adjustments are common and well-implemented; people know to ask for them and employers know how to accommodate them. However, with a complex condition like ME/CFS, there may well be additional changes and adaptations that could benefit your wellbeing in the workplace – and many people simply don’t know that they have a right to ask for them. In this post, I’ve listed as many of these reasonable adjustments as I can think of, in the hope that they’ll help you to think about your own unique needs and how to discuss them with your employer.

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Becoming A Chronically Ill Freelancer – My Story So Far

pippa sat at desk wearing stripy shirt and silver noise cancelling headphones, writing in a diary with open laptop in front of her and books in the background

Time and time again, people ask what I actually do for a living… and I’m yet to find a concise way of answering this question. If they’re familiar with my online life, I’ll tell them I’m a writer and a blogger. If they’re aware of my health situation, I’ll tell them I work from home in digital communications. If it’s somebody I don’t know well, I’ll simply tell them I work in the charity sector. And all of these answers are true.

My Background

I graduated from university in 2016 (finishing my postgraduate diploma in 2017), and thanks to the joys of an unrelenting chronic illness, I had no idea what the future would hold. As I discuss in more depth in this post about being an ‘in-betweener’, I knew I was well enough to work in some capacity, but far from able to pursue a typical 9am-5pm occupation that involved leaving the house and being around other people every day.

Still adapting to the constraints that my health had imposed on my day-to-day life, back then I didn’t think I would have the luxury of choice over what job I went into; I thought I’d simply have to take whatever I could secure. By then, my self-worth had taken a serious battering. Everything had been overshadowed by my condition and the struggles of navigating an inaccessible society, and I was yet to realise that I still had all these valuable skills to offer.

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Volunteering From Home – Flexible, Inclusive Opportunities For All

pippa sat cross legged on bed in comfy lounge clothes, laptop on knee, looking up and smiling

I firmly believe that there’s no such thing as too many acts of kindness. In light of the current situation, it’s been so heartwarming to see the general public coming forward to volunteer, asking what they can do to help others.

With restrictions on work, socialising and leaving the house, many people are suddenly finding themselves with time on their hands. Now, I know as well as you do that this time could readily be passed motherlode-ing to your heart’s content on The Sims or watching Netflix all day every day, but hear me out here: what if I told you that you could easily support deserving charities and the vulnerable people they work with… without leaving your home?

I know first-hand that living with a health condition that makes it difficult to get out and about means it’s much more challenging to find opportunities where you really feel as though you’re doing something worthwhile. And since us chronically ill folk have so much to offer, it’s time we look at ways of getting around these hurdles.

So today, let me introduce you to a few potential ways you can volunteer from home. Whilst they’re not specifically related to the pandemic, I’m sure you’ll agree that the charity sector could do with your support now more than ever. We’ll start with the more established schemes, and then move on to more general suggestions for how you can use your initiative to find opportunities that suit your skills…

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For The ‘In-Betweeners’: The Invisible Challenges Of Moderate Chronic Illness

two images of pippa. left image features pippa in pyjamas, holding soft toy, with nose cannula and headgear, right image featuring nice dress and hair and make-up done for going out

I vividly remember writing this piece on a difficult afternoon where things felt, as they so often do, rather hopeless. At the time I decided there wouldn’t be any value in putting this out into the world, especially with this post being rather more sombre than my usual writing. However, after discussing the topic with friends and seeking their feedback, it feels like the right time to finally share these musings. So today, let’s talk about the invisible challenges of being an ‘in-betweener’, moderately affected by chronic illness…

Update/ Disclaimer: ever since I first published this piece, I’ve been rather bombarded with emails offering advice and opinions on the issues discussed below. Whilst I recognise that many of these messages have come from a kind-hearted place, I wanted to reiterate that in any of my work, unless stated otherwise, I am not seeking advice or assistance of any kind. Please keep reading until the end of the post, where I discuss the ways I’m dealing with some of these issues; many of the suggestions people have been quick to point out have already been mentioned in this very piece. I appreciate you reaching out, and I don’t want to seem dismissive or ungrateful, but the very best thing you can do for me is saving the valuable time and energy you’ve used in reaching out, for yourself. Thank you for your understanding!

Before we go anywhere with this post, it’s important to make clear that I recognise my privilege. I live in a country with a healthcare system free at the point of us, I have supportive family and friends, I experienced a good education and have a regular-ish income. Although I’m chronically ill, my condition could affect me much, much more severely than it currently does. I can and do count my blessings on a daily basis, and I mean that sincerely.

Today, however, I’d like to talk about the difficulties of my current situation and in doing so, I hope you’ll keep an open mind. Chronic illness can so quickly turn into the ‘who has it worse’ game, particularly online, and I hope that my own little corner of the internet can steer clear of these shenanigans. Please do keep reading until the end and hear me out, because I have no doubt that I’m not alone with this one.

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