Many illnesses are invisible and looks can be deceiving; those who live with chronic conditions and mental health issues are experts at faking being well, they are well accomplished at acting ‘normally’ when they are suffering physically, mentally and emotionally. I want this blog to be a positive experience for all readers, but I also want to be a voice for those living with chronic illness and those conditions that cannot be ‘seen’. It is not an attention seeking exercise or a sob story, but it is only right and natural that I raise awareness so that others can get an insight into the daily struggle of trying to act normally when you are trying to hide or control your many symptoms. A good day is a day when you are stronger than your symptoms and you don’t feel like you have been hit by a truck, it is important to be positive but not every day is good and so there must also be room for sadness, the two can coexist. Honour the pain and loss; these feelings are valid, and it is important to give them their rightful place in your healing journey.
Sometimes those of us with chronic illnesses and mental health issues feel that the only people who understand us are fellow sufferers and the online support groups. We are often fighting this battle in isolation amongst those who are not in our bodies. We are not lazy, we are not hypochondriacs, we want to work and socialise, we are not being dramatic, we do not lose our careers, or spend a fortune on healing treatments (and concealer), and step back from social engagements to get attention, we do it because we’re sick and tired.
Living with a chronic illness can mean that you have intermittent brain fog, forget passwords, have insomnia, are tired every day, feel like a useless burden to others, are lonely, feel older than your years, can’t do simple tasks, have constant anxiety and are often depressed. Good days are such a blessing and worth more than any lottery win.
In terms of my own condition, the symptoms of Parkinson’s really are endless, and it would take many pages to include them all and even at that some would be left out. Parkinson’s is a neurological condition that affects movement, it can cause slowness and stiffness in muscles, tremors, loss of control and balance and it also affects mood and anxiety levels. There are so many symptoms and each patient will experience these on varying levels. On my own worst days, I have restricted movement, chronic fatigue and excessive anxiety; this then leads to panic attacks, palpitations, hypertension and low self-esteem. At times I isolate myself socially and lose independence as I don’t want to be around people due to paranoia and embarrassment. The anxiety is crippling; it feels like suffocation and an uncontrollable feeling of terror. On my slow days being able to hold a fork or dry my hair is like climbing Mount Everest. During my bad days the fatigue is overwhelming; I get exhausted walking up the stairs, and on those days I dream of being able to do housework without having to take a break, I want nothing more than to go on a night out with friends and last past 10pm, I wish that I could make plans and know that I will definitely be able to stick to them, but what I want to do and what my body lets me do on my bad days are two very different things.
So even though we ‘don’t look sick’, we are. When we say, ‘I’m fine’, we are not always telling the truth. When we look well, you don’t know the struggle it took to look that way. Remember that everyone is fighting a battle that we don’t always know about. So please support us, love us and try to understand…