Navigating a career in comms with an invisible illness

By a PR Professional with M.E.

The world is becoming more accepting and many companies are becoming more supportive and talking about how they want to build diverse teams. Writing as someone with an invisible illness – why are we still scared to speak up and risk not getting that new job or limiting our progression opportunities? 

Although disability is one of the protected characteristics, and employers can’t be seen to discriminate against it, as someone with M.E/CFS, an incredibly misunderstood, invisible disability, it definitely feels like we’re open to being ridiculed for something out of our control at times. I can also tell you this though, there is hope and you don’t need to put up with working somewhere where you don’t even feel comfortable admitting you have an invisible illness.

I’ve written this blog in part to raise awareness of M.E – as a late contribution to the M.E awareness week activities earlier this month. But also, to try and raise awareness of how you can achieve career success with an invisible illness and how employers shouldn’t overlook the talent, unique characteristics and determination found in employees with long-term health conditions and the benefits they can bring to your comms teams. 

Turning a negative into a positive  

First things first – I hate the word disability. 

I personally feel like it makes us feel like we’re less able, which reinforces that stigma that we wouldn’t be good candidates for that new job or promotion. In my experience, some employers see the word disability and either get so terrified of accidentally discriminating, that they end up doing so, or they don’t want to give a job to someone who might end up taking more sick days than the average employee. 

Communications professionals have the opportunity to open up more conversation about disability and long-term health conditions and de-myth the stigmas. Progress in society is already slowly being made, especially with the power of social media giving everyone a voice on global platforms. 

One thing I’ve noticed is that having a long-term health condition, of course, takes away so much from you, however, it also makes you who you are. It makes you more understanding and compassionate to others difficulties, it makes you more resilient, it makes you think outside the box and in my experience and what I’ve seen from others – when you’ve lost control of so much in your life you’ll do anything you can to regain some form of control and it lights a fire inside you making you determined to succeed in your career and life, even if you inevitably face some days you feel defeated. 

I think it’s important to share some background to my story for you to understand why I think like this. I fell ill when I was 8 years old. I got diagnosed with M.E around a year later. I spent most of my childhood and teen years stuck at home with what they call moderate level M.E. I ended up home tutored, often only well enough to manage 1 hour a week. I struggled to walk – when I went out I often had to use a wheelchair which at the time felt like the most humiliating thing in the world after being a normal active kid. I faced constant disbelief and horrible comments from friends and even family members that thought not going to school would ruin my life (as if it was a choice). All I longed for was a normal life. With careful management of my symptoms and energy, and a lot of luck in my late teens, my health improved a lot – however I’ve spent years yo-yoing back and forth with relapses. Luckily, today as I reach my mid-twenties I only have mild symptoms, but this can quickly change as things like infections and over-exertion either physically or mentally cause days, weeks or months of heightened symptoms and pure exhaustion. But overall, I’m incredibly lucky to now live an almost ‘normal’ life. 

Having so much taken away from me so young made me realise I can’t take normal things for granted ever again. It was this that drove me to push myself through higher education despite the difficulty going through this with an illness that was fluctuating constantly and with limited support. All my peers throughout higher education thought I was a massive nerd, telling me how smart I was. The reality? I was no smarter than them. None of them knew I hadn’t gone to school, that I only had a small number of GCSEs, unlike them. I was just motivated to succeed and had a positive attitude towards progressing in life, which ultimately helped me gain the best grades you can get at college and university – and what drives me to do the best job I can in my work, every day. It’s also why I try to constantly improve on my knowledge and skills. 

Sometimes, this can cause problems, being so determined to succeed means you put a lot of pressure on yourself and take on too much, meaning you use too much energy and risk a relapse – possibly the scariest thing for someone with M.E who knows that a relapse could take you years to recover from if you ever do at all. But with careful management and a supportive network who understand you shouldn’t push yourself to the max all the time this can help limit the risk. 

What comms professionals can do to make life easier for disabled colleagues

Our purpose is to communicate and positively influence others. So we should use our skills in this to do so. 

Whether you’re someone with an invisible illness working in comms, or you have the ability to get enough of an understanding to create compelling content to raise awareness, we can all do our bit to help.

For people with invisible illnesses, I understand this is a worrying concept, with the idea that people won’t accept you, will view you differently or limit your future opportunities (that’s why I’m writing this guest blog anonymously lol). But we can take small steps, whether it’s sharing guest blogs like this, or reaching out to journalists – I’ve had a couple of friends do this when journalists have requested information and people’s experiences about M.E or invisible disabilities – and they’ll usually let you do this anonymously/use a different name.

Start a conversation in your workplace

If you’re an employer or manager, be open, trustworthy and welcoming of people’s differences. Opening up about invisible illness can be hard to do until you’ve built a trusting relationship with your colleagues. A major reason people don’t want to open up and, in part, why many posts including this one are anonymous is due to the concerns about the reactions of our colleagues now and in the future. I’ve been lucky enough to work in a team that is very open and supportive. It did take me time to talk to my colleagues and employer about my health condition, but it was such a relief when I did. If everyone opens up this dialogue, I think slowly we can make more employers be more accepting and see that we are just as able to do our jobs – and actually do it better with a little support and flexibility. It can also help colleagues understand and accept why you have been offered additional flexibility. 

Try to have patience when colleagues are having a bad day

With fluctuating conditions like M.E, especially for those with milder cases like I’m lucky to have myself now, is that we never know what we’re going to be facing from day to day, from hour to hour. Our energy levels deplete so quickly sometimes we can go from having enough to get through a day’s work in a morning to not being able to function properly by afternoon. There are endless symptoms we’re having every day whether you have a mild or severe case. From migraines and headaches to full body pain, sleeping problems, light sensitivity, digestive problems, brain fog and more. Personally, I find the brain fog the worst thing to cope with as a comms professional. Sometimes it’s so bad I struggle to string a sentence together never mind writing an article. It’s important on days where symptoms are at their worst to have patience, as how someone with M.E is feeling on a good day would most likely put a healthy person off work, never mind a bad day. 

Offer the freedom of flexibility

Despite the struggle people with M.E face. For people like me with milder cases, as long as we manage our energy and triggers like catching infections we can hopefully avoid a relapse bad enough to stop us being able to work. Many people I know work freelance for the flexibility to manage things easier and work from home. However, the Covid-19 pandemic has taught us that remote and flexible working is more than feasible for comms professionals and there is no reason why we shouldn’t be able to work in-house or in agencies with a little bit of support and flexibility. Although I’ve in the past been tempted to go freelance so I can manage my condition better, I thrive off working with a team, bouncing ideas off each other and having that social side to work too – which everyone should have the opportunity to do.

Things that have helped me – and which you can to put into action in a comms career:

  • My employer trusts me to work from home when I’m having a bad day, so I don’t have to take a sick day but can work in the comfort of my home which eases muscle pain and avoids having to deal with things in the office environment such as bright office lighting and socialising with the team that can feel too much when you’re feeling ill. This benefits me, and my employer as I still get the work done and I don’t have to deal with sick-pay causing additional stress and financial difficulties. Sometimes, working from home for a day or two just gives me that rest I need to be back to “normal”. 
  • Opening up a conversation about flexible working times. Being able to ask to start later in the day and finish later has helped me. Although this isn’t something ideal for every day as you still want to enjoy your evenings and routine can help manage your energy to some extent. Many people, myself included find that some days we’ll work a lot better starting a little later in the day. 
  • Plan your days and keep organised to make things a little easier. Know when you’ve got client meetings and maybe try to arrange your lunch break for before or after this to get some rest. If you’ve got a quiet day, try and get ahead on things that you will have coming up in the coming weeks, as all communications professionals know, things happen quickly and some weeks you’ll unexpectedly end up with a lot more to do than you anticipated. Basically, limit stress where possible, as this can be a major trigger.

I hope this blog has given employers and comms teams some insight into how disabled colleagues are no less able to achieve success at work and are actually assets to teams. I don’t think I know a single person with a long-term health condition that wants others pity, which is in part why many of us with invisible illnesses don’t tell people. But when someone with an invisible illness builds the courage to tell you about it, your reaction and even the tiniest amount of support you offer can make a hugely positive impact on their life. 

Please if you can, take a bit of time to learn about M.E. Most people with M.E face disbelief, misconceptions and straight-up ignorance. There are millions of people worldwide with the condition, one day you may come across someone with M.E and your understanding could make all the difference. I’ve just spoken about my individual experience. However, I want to do justice to the whole M.E community. I have friends that have unfortunately had their entire lives turned upside down by M.E who aren’t able to live any kind of normal life. In the very worst cases, M.E can kill. Someone with mild M.E like me faces very different challenges to someone with severe M.E. I’m one of the lucky ones but it doesn’t mean mild M.E is easy, it’s hard and many of us wish sometimes you could see what we’re dealing with inside so you can understand why we’re asking for a bit of support and flexibility at work, or having to cancel on after-work plans. Many of us have to choose between work or having any kind of social life at times which can, of course, take its toll mentally, without added pressure from peers. 

Find out more about the condition here:

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