Your chronic illness is your super power! Championing chronic illness in the workplace

This week is the first week I sit at my desk in over 2 years without a painkiller in sight and a hot water bottle strapped to my back and sides. It’s also the first week I sit at my desk with my new sidekick - Stella - my stoma!

Stella is the result of a long term chronic health condition, something that approximately 15% of the working age population have and half of these are invisible illnesses. With the pandemic also affecting treatment and diagnosis times, as well as the rising cases of long covid – the conversation about health and wellbeing in the workplace is more pivotal now than ever. Being diagnosed with a chronic illness is a challenging time for so many both mentally and physically. Often the journey to diagnosis is a battle in itself, then there comes the whole new adventure of learning how to live with it, and this brings on a sudden cyclone of concerns and questions - particularly when it comes to work! How do I tell my boss? Will this affect my progression? I’ve already used up all my sick days? How will I fit in my appointments? Will I lose my job? – Sound familiar?

The reality is that with any long term and chronic health condition or disability there are going to be good days and bad days, there will be days where you can take on the world, smash your goals and dream as big as you dare to, and then there are others where your chronic illness decides how your day should look instead. There are going to be days missed off work for sickness and appointments, days of chasing doctors, out of stock prescriptions and medical supplies, but there are also going to be days full of light, success and triumph both in and out of the workplace. With all this going on we also wonder how we will make it work with our careers and how we can make our leaders and colleagues understand how to help us when it comes to work.

As first impressions go, mine and Stella’s didn’t go particularly well – she was a bit different and I couldn’t understand how on earth she would fit into my daily life let alone my work! So if you’d have told me 2 months ago when we first became acquainted that actually she would be the reason I not only am able to BE in work but also able to THRIVE at work, I wouldn’t have believed you.

Ultimately, I found there were two things I needed in order to put me in some sort of control of my chronic illness when it came to work:

Number 1 was that I had to learn how to best understand and manage my condition (as best as I could anyway!) and this is not easy – not least because so many chronic health conditions can take years to diagnose, they are in most cases unpredictable, under researched, under-funded and even when receiving a diagnosis each person’s symptoms are completely individual to them, so effective treatment is a lot of trial and error. With this in mind you have to be a real advocate for yourself when it comes to getting a diagnosis, the right medical team, the right medications and general day to day support and advice. Your health is the foundation that everything else in your life sits upon, and without the proper access to all of these things, working reliably becomes really hard.

The second thing I needed was the confidence to be able to speak about my condition and the adjustments I would need with my employer. This meant working in an environment where I felt comfortable enough to talk about my condition and the support I needed to be confident and successful in my role. I’m very lucky at Inspired Selection to have the most unbelievably supportive boss and team, and I can honestly say that without that I would not be able to do my job and manage my health successfully. This is why it is so important to have a strong supportive foundation in place for your employees, but equally important that if you have a chronic illness you are also honest with yourself about what you are capable of so your employer can best help you.

Having that first initial conversation with your employer about your health condition can be really worrying, so much so, that there are many people who would not bring it up for fear of being judged or treated differently or even losing their job. Many people have said to me ‘you don’t need to tell anyone about your stoma or your health condition’, but for me personally, communication and transparency were key in order for me to achieve what I wanted to. There is never any shame in admitting you need some help, especially when it supports you to achieve your goals – you also then know that you wouldn’t be expected to do something you’ve already explained is not possible. Remember also that you don’t have to be alone and if you want someone you trust who knows about your chronic illness to be present with you when having this discussion who might be able to help further then this can also be arranged.

There are a few things to bear in mind when approaching these conversations and also coming up with a way to support an employee with a health condition to ensure the best outcome for all:

Firstly, it is important for both employer and employee to be in control of their emotions. Discussing your illness – even in a very supportive environment – can be daunting, and people may subconsciously have their guard up for fear of being misunderstood or not supported. The same goes for if you’re the leader being told – you may also have sudden emotions of worry, fear, stress, doubt –it is important to not let these get the better of you and instead be open, honest and collaborative when it comes to what can be done to ensure a positive future for you both. Don’t forget also that our leaders and colleagues can have health conditions too! You never know what support and guidance you might find if you don’t start that conversation.

Be realistic with expectations and what it looks like to be successful in this role. Do people really need to log on early, log off late, work through lunch to be considered successful or more committed to their job? Someone with a health condition in most cases is not going to have the same energy levels as someone who doesn’t, their body is already using up a ton of energy just to be in work! So ensure there is an environment where breaks are encouraged, and expectations of what looks great in that role match with what that person is capable of doing, and that it will not hold them back or make them be seen as less eligible for that promotion or project.  

Create an environment where people feel confident to talk about their health in general! Do your colleagues and employees know how to access help or advice in the workplace on any concern of theirs – health or otherwise? Maybe you already have a scheme in place that needs to be shared more? It’s important to always have support schemes easily accessible and visible to eliminate that fear barrier of having to ask. Knowledge and awareness is also power – could you arrange to have speakers come in to talk about certain topics and health conditions, charity events, awareness days, coffee mornings or support clubs? The more we encourage people to not just talk more openly, but also to take charge of their health and wellbeing, we are showing that as businesses and leaders we want to learn and adapt in order to support our teams better, resulting in them being more confident in coming forward with worries or concerns, asking for help and ultimately having a more positive happy workforce.

Be flexible with adjustments. If the last couple of years have taught us anything, it’s that actually flexibility can not only be put in place, but can be beneficial for business! Whether that be working from home, more regular breaks, allowing people to work flexible hours around health check-ups and appointments etc. or even making changes in the office, maybe investing in or changing equipment to help someone to do their role more efficiently - be open to change and ensure this is monitored and reviewed regularly. It’s also important to note that even if it is easier for someone to work from home, make sure if they do want to come into the office it’s just as easy for them – is there easy access to certain facilities like lifts and disabled toilets? Is there a safe space they could keep spare emergency medical supplies to save bringing them in each time? A lot of medical supply companies will even deliver to workplaces too!

Listen, ask questions and keep the conversation open on both sides. As I said before – it is highly likely that with any chronic health condition that person is going to have good and bad days, and it can easily become frustrating – especially if someone is off work and other colleagues are covering them etc. Rather than become irritated, become interested, and as soon as that person is well again ask them if there could have been something that could have been done differently that might have prevented that absence. Maybe they missed a doctor’s appointment for a meeting, maybe they burned out because they were trying to keep up with a colleague, maybe their treatment plan isn’t working – the more we try to understand, the more we may be able to help. Similarly if you are concerned that something in your work is making your illness or disability more difficult to manage you must communicate this.

Remember the bad days don’t last forever. Someone with a chronic illness isn’t lazy or unmotivated but sometimes they will feel guilty and believe this is how others perceive them. Don’t forget to give them the same amount of praise and encouragement to reassure them they are doing great! Actually – chronically ill colleagues have some of the best skills! They are able to manage their energy, be super organised, they are self-aware and great problem solvers because they do these things every minute of every day!

There may be those reading this today whose chronic health condition has meant this morning they called in sick again, or who is worried no one understands, or who feels like they can’t keep up with their colleagues and doesn’t know who to turn to. There may also be a leader who has just taken that sickness call from a team member and doesn’t know what to do or how best to support them. Ultimately, that person wants to be in work, they want to succeed and they want more than anything for their life to not be controlled or defined by their health condition. So let’s become interested and CHAMPION these super colleagues:

Control our emotions

Have open and honest communication 

Adapt and be flexible

Manage Expectations fairly

Praise and Recognise achievements

Increase knowledge and awareness

Offer and create workplace support, advice and guidance

Nurture, grow and succeed together!

We have no idea what the future holds for chronic illnesses – hopefully better treatments, awareness, and cures! What I do believe is that they are our superpowers! Every day we get up, get ready – I wrap Stella in her superhero cape (I believe the medical term for this is an ileostomy bag!) – and we all go into each day one day at a time; and although there will also be a few days that seem to strike us down out of nowhere and stop us in our tracks, with the right leadership, flexibility and measures in place in our workplace – which allow us to get back up and be more than our illness – we are armed with something that we may well have lacked, or not have had at all had we not had the right access to workplace support… hope!

We would love to carry on the conversation and hear about others experiences when it comes to championing chronic illnesses, health conditions and disabilities in the workplace, so should you wish to get in touch please contact Kate – k.gamble@inspiredselection.com . This blog was written by Kate Gamble, PA and Researcher to MD, Suzy Astbury.

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