The hash tag in the headline is used across social media for those on a health kick and endorsing a healthy way of living, but it’s also used for those living with chronic illness or disease. The number of New Zealanders living with chronic illness is scarily high and on the rise according to figures from the Ministry of Health New Zealand Burden of Diseases, Injuries and Risk Factors Study, 2006–2016, and I feel certain NZ won’t be alone in this phenomenon. Those who I do think could be feeling very alone are those dealing with chronic illness at work. Be it physical or mental, these are illness’ no one else can see, often described as invisible illnesses and being chronic, won’t be just a one off occurrence.
There is much written on this topic on line and in papers & magazines from the individual perspectives of those dealing with these situations; they describe reactions from others towards them and their situations as ranging from disdain to disbelief and vague understanding to sincere sympathy. But even given how much information is out there and being written to raise awareness and understanding I think more often than not they simply exist without any acknowledgement. Most people living with chronic illness, especially those that can’t be seen prefer to do so in private for a whole host of reasons. They don’t want to be judged. They don’t want pity. They want to be able to join in conversations on normal topics without their viewpoints being taken the wrong way. And most of all they want to appear normal. Chronic illness or disease is often multifaceted, so not only will it recur, but there are so many moving parts to it in some cases that people feel unable or unwilling to explain the extent of their illness, using an umbrella approach or describing one part of the issue/s if at all.
So what can be done to help those living day in day out with chronic illness or disease? First and foremost as with everything in life be mindful; treat others as you would have them treat you, if you haven’t got anything positive to say don’t say anything at all and all those other wonderful mottos to live by our parents gave us. Just be aware that we don’t always know what other people are dealing with. And should they choose to confide in you be understanding, be sympathetic but don’t be patronising. And try to avoid offering helpful advice if you haven’t got any first-hand experience on what they’re going through. Suggesting trying yoga to someone in chronic pain or sympathising with how tired you are too to someone which chronic fatigue won’t help and are things they’ve probably heard a million times before. Instead ask them what, if anything, can be done to help them during the bad times, encourage them to let you know when they’re having particularly hard times so at the very least they’re not going through it alone.
There are many things that can be done in the workplace to help ease these situations, make the circumstances more manageable for people and to provide support. Many firms offer the likes of flexi working arrangements where days and hours of work can be negotiated; others offer on-site occupational health and safety in the form of nurses and or wellness advisors. Employee Assistance programmes can be useful too; both for those dealing with mental and physical illness as both can be a burden and talking it through with a professional can be immensely helpful. Above all creating a diverse and inclusive workplace culture will go a long way to making people feel they can be honest about these situations in the workplace. In today’s fast paced, technology driven, innovative, ever changing world many would feel it a sign of weakness to admit to and be honest about an illness, so it’s important we all work to create environments where this is ok.
As individuals I think if we all took just five minutes to Google a couple of hash tags we would learn a whole lot about living and working with chronic illness, and that in turn would bring more awareness in general. Hopefully that would also bring about more conversation and create more accepting and inclusive workplaces whereby people feel they can bring their whole selves to work. Therein lays my challenge to you: three hash tags, one minute for each on your choice of social media…#chronicillness #spoonie #invisibleillness to increase your own awareness.
Another Google search quickly unveiled a number of support groups, both in real life and via social media for an immense range of chronic illnesses. Ensure if someone does come to you or let you know they are dealing with something that you take it and them seriously and that you respect them coming to you. They may or may not know what other support is available out there, so help them explore the options available to them.