Wellbeing
Invisible disabilities in the workplace
Nichola Ebbern, Head of Health and Safety at Paradigm Housing Group, shares her personal experience of living with an invisible disability and some advice for how employers can support staff.
I am disabled and you wouldn’t know it if you met me.
I am not alone. In Great Britain in 2012 there were 5.7million disabled people of working age and while there are no formal figures on those with disabilities that are not visually recognisable, research suggests this is as high as 70%. Coincidentally I became disabled in 2012 which means I become one of the approximately four million people living with a hidden disability. I look like the average person, but I definitely don’t feel like it!
Like many people, I have hidden my disability in the workplace because of the stigma but one of the benefits of lockdown has been time for reflection and reassessment of priorities. I feel that I’ve moved forward significantly on my personal journey and I’ve come to realise that I’ve got a useful story to tell. I want to help others to address the unspoken topic of hidden disabilities and making work a more equal and fair place to be.
In 2012 I was diagnosed with breast cancer – I was unusually young: according to the Government, in 2015 there were 1.8million people living with a cancer diagnosis and only 7.6% of these were under 44. Like many women and men with breast cancer, following on from my operations I had chemotherapy and radiotherapy followed by years taking tablets.
Research shows that up to 80% of cancer sufferers will experience chronic fatigue and often this will continue for years if not the rest of their lives. Chronic fatigue is linked to so many illnesses, some of which result in a formal disability and others are chronic conditions, such as chronic fatigue syndrome (CFS/ME), fibromyalgia, congestive heart failure, diabetes, chronic obstructive pulmonary disease (COPD) etc and of course COVID. There are many people in the workplace managing their energy budgets on day to day basis.
We aren’t talking about the type of tiredness that is solved by getting a good night’s sleep and feeling brighter in the morning. This is about having a limited energy budget and every day making decisions about how to spend it. Do I clean the bathroom or take the dog for a walk? Do I go out for dinner or stay at home and garden? Do I travel into the office to work or work from home and go out in the evening with friends?
Scale of wellness
As you can imagine, this has a massive impact on all aspects of my life. I have come to realise how interconnected my physical and mental health are and how I’m on a sliding scale of wellness every day. Small things in one part of my life can have a massive impact on other areas
There is some evidence that links between poor mental health and increased fatigue. Other research links increased physical activity (within an individual’s limits) with improved mental health and energy levels.
I’ve found both of these things to be true and this is where my other long-term health condition comes to the fore. Lymphoedema is a swelling of the arm (or other body area) and in my case it is caused by removal of the lymph nodes in my armpit. About 20% of those who are diagnosed with breast cancer go on to develop lymphoedema, for which there is no cure and for most, management of the condition through Manual Lymphatic Drainage is only available privately.
Like many my lymphoedema is exacerbated by physical activity. I can’t run any more, and this used to be a major stress management tool – I ran on average about 30/40 miles a week every week until 2012. I now need to balance what and how much activity I undertake with the increased pain and suffering I experience when the swelling intensifies in my arm.
Understanding what it means
Having shared my story, what does this mean to you and your organisation? My key message is talk to the person who has the condition. Understanding what it means for them and their attitude to their condition will help you chose the right language to be supportive. For example, I don’t see myself as brave or a survivor and actually find those terms patronising, but I know people who do and are rightly proud of their achievements. Don’t let your interpretation of my condition form your views on what will or won’t help me as everyone experiences and reacts to their condition differently.
The best manager I have ever had accepted my story with no judgement or pity, it was just a fact. Having taken the time to get to know me, she recognised that my desire to deliver results and my focus to achieve my aims can have a negative impact on my health. I put these drivers to ‘achieve’ above my body’s capacity and my well-being. When I use all my energy budget to spin my work plates amazingly there is a personal cost in the following days. My manager used this insight to remind me when to slow down or reprioritise deadlines and was supportive in an unobtrusive way which works for me.
For years I kept my medical condition a secret from my workplaces as I was worried that people would think I wouldn’t be able to perform or deal with the pressure of a stressful job but now I see I had it the wrong way round. I know I can deal with pressure, a fast paced work environment and travelling internationally for work, I just need a little flexibility occasionally. So now I believe that if an organisation doesn’t recognise and value my skills because of a perceived issue then I don’t want to work there. I have the choice to find a positive, supportive and caring employer but I can only do that by being open with them.
Open and honest
If you have a hidden disability, help your line manager to help you by being open and honest so that they can understand you, see the challenges in your life and work with you to help you achieve your peak performance both at home and at work. It’s scary but worth it!
It is estimated that 600,000 people are currently alive in the UK having been diagnosed with breast cancer. 13% of women said they could no longer carry out their job due to long-term effects caused by their breast cancer diagnosis. In this article, Addie Mitchell, Clinical Nurse Specialist at UK charity, Breast Cancer Now, spoke to SHP about how employers can support staff, following diagnosis.
Click here to find out about Breast Cancer Now’s Moving Forward courses.
Invisible disabilities in the workplace
Nichola Ebbern shares her personal experience of invisible disabilities in the workplace and provides advice for how employers can support them.
Nichola Ebbern
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