A huge number of chronic illnesses are ‘invisible’ to the naked eye and even those closest to someone living with an invisible illness can struggle to see the challenges it poses and understand how it feels to live with.
Chronic illnesses are a double edged sword, on one hand patients can feel the societal pressure and expectation to behave ‘normally’ and continue to go about their daily life. On the other hand, loved ones, employers and friends can make assumptions which prevents them from asking that person about how they truly feel or the state of their health.
In these situations it can be tempting to play the blame game but nothing productive will come from it. Instead let’s think about how we can bridge the divide between these two groups. In order to do this we must firstly understand how both sides may feel and the questions, thoughts and challenges in the forefront of their minds.
Someone living with an invisible illness can experience the whole spectrum of emotions at one singular moment. Not only is this overwhelming but also confusing, frustrating and isolating, which pushes the individual to retreat inside their own head as they feel alienated from society. One of our greatest fears as humans is the fear of being different, this is because for our ancestors being different resulted in rejection from the tribe and thus death from predators or the environment. Although thousands of years have passed the human brain is still hard wired to recognise rejection as a direct path to death. Therefore individuals living with invisible illnesses live with constant reminders that they are different, whether it is symptoms that hinder day to day activities, medical appointments, examinations, tests or procedures.
Additionally we cannot discuss these illnesses without highlighting the fact that they are invisible to a layman walking down the street. We are all guilty of spending life on autopilot. We amble through our day glued to our smartphones unaware of what passes us by. We are quick to judge and jump to conclusions; we walk into the supermarket and see someone with ‘a face like thunder’ and think ‘what's wrong with them’ or mistakenly believe it’s helpful to make a joke by saying ‘cheer up love it can’t be that bad’. For someone living with an invisible illness being on the receiving end of these quick judgements or lack of awareness reinforces their alienation from the ‘pack’. It puts them in an impossible position, questioning what to say if anything about their condition; should they justify or explain themselves? Should they ask for any exceptions or leniency?
Anyone living with invisible illness carries the heavy weight of feeling like a burden. They constantly fear the judgement they may be subject to from those at the fringes of their life in work and wider social groups. I truly believe that we are only responsible for ourselves. Someone living with an illness can know this and still lie awake at night wondering how much stress they’re adding to others’ lives. They may question if their life would be better off without them in it and worry that a close relationship could change into one of carer and patient?
Now we turn to how an invisible illness can affect loved ones, friends, and colleagues. Many of us can relate to the role of being a ‘fixer’, we see a problem and without hesitation search for a solution. Unfortunately invisible illnesses are an anomaly where a solution focused approach will not work. It can be tortuous for those around someone with a chronic condition to watch them suffering with no respite and feel completely powerless to take their pain and struggle away. It’s important to point out that even the most compassionate, empathic and kind hearted soul will be unable to fully understand what it is like to live with the condition. They can listen and use every ounce of emotional intelligence but in these circumstances no one else can walk in the shoes of someone living with a chronic illness.
Moreover, invisible illnesses are by nature unpredictable. Not only does this require the person living with a condition to be adaptable and flexible but those around them as well. It may not be possible to plan the social calendar weeks and months in advance, and commitments have to be delicately balanced with downtime for recovery and rest. Negotiating this tightrope can feel like an impossible mission especially in a busy family when there are several needs that need to be met. Also if communication breaks down between those living with a chronic illness and their loved ones neither side will have a good understanding of what the other needs or how to make any reasonable adjustments.
Finally we turn to the world of employment. There is a lack of education and training available for employers on how to effectively integrate those living with invisible illnesses into the workplace. I can sympathise with business leaders who consistently take action to ensure equality and diversity in the workplace but have been left to fend for themselves in this area. This divide between employers and employees is exacerbated when those living with a chronic illness feel unable to confide in employers and feel it is necessary to hide their circumstances and struggle in silence.
So the question remains, how do you bridge the divide between these two groups of people?
As someone one who moves between both of these groups I have created my top tips to get you started:
Living With An Invisible Illness
It's Time To Externalise That Internal Dialogue - Your emotions and thoughts about your condition can be overwhelming on a daily basis and the sheer volume of this is too much for anyone to keep inside their head. Find a person or group of people that you can start sharing your experiences with.
You And Your Condition Are Not One Entity - You are your own person and all the wonderful qualities and quirks of your personality cannot be eradicated by a diagnosis. Write a list reminding you of everything that makes you ‘you’ and choose an activity that brings you back to your authentic self.
Those Around You Aren’t Psychic - Living with an illness can be isolating and alienating because other people just don’t get it. But this won’t change unless you help them to understand by sharing how you truly feel and what you need from them.
Supporting An Invisible Illness
Information Is Power - No one is born with the knowledge of how to handle every possible situation life throws at them. But you do have the power to educate yourself and move from ignorant to empowered to make a difference and help the conversation around invisible illnesses.
Creativity Is Your Secret Weapon - Life with an illness is unpredictable but it is possible to have a good quality life filled with happiness. When planning the social calendar, think about how you can do this creatively to enable those who need to give last minute notice and cancel unexpectedly.
We Need To Get Comfortable With The Uncomfortable - We all struggle to sit with emotions that feel upsetting or uncomfortable but this is the key to unlocking the most difficult conversations. Take the time to sit together and share your experiences, listen without judgement and you will be amazed at how cathartic this process is.
The conversation around invisible illnesses has been neglected for many years but you can change that by taking action in your families, communities, friendship groups and workplaces.
I hope this has been informative, helpful and empowers you to be the voice that stands out in the crowd challenging those around you to change.
Let me know what your experience is on either and both sides of this conversation!
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