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By Beth Dillon
So, why discuss it? Well, as a young person it feels like everyone is discussing it, your friends are moving on, starting their own lives, and constantly talking of their own ever increasing independence. However, when you have a chronic illness or a disability, then it is easy to feel conversations turning towards dependence for you. Requests such as “will you come with me” or “could I have a push”, or even “can you give me a hand with getting changed”, are not requests you see others your age having to make.
This does not come without mental health implications which is a key aspect of the discussion around independence. Chronic illness and disability can sometimes cause you to be scared to go out alone, scared to do anything alone as this ‘aloneness’ has become an alien concept. This in turn leads to a loss of
confidence which can infiltrate all aspects of your life. This includes things which don’t overtly relate to health problems, such as confidence in your academic abilities. Socially this lack of confidence can emerge in the fear that your friendships are partly sustained by sympathy and that actually they don’t really want to be your friend. This dependence causes a loss of dignity; the reliance on other people for what feels like the most intimate and meaningless tasks can be frustrating and make you feel a wee bit useless.
Finally, the most overwhelming, crippling guilt can consume you so you feel like you can’t even breathe. You want the people you love to not have to worry or care for you and you worry that you aren’t delivering what ‘they signed up for.’ You want to help far more than you can, creating what feels like an imbalance between what people do for you and what you do for them, which only increases the guilt. You can begin to view relationships as almost an exchange (Which is obviously not how relationships actually work!) in which you feel like you are simply taking and never giving anything back yourself. People insist they WANT to help but it can be so hard to hear them over the guilt.
Another important point of discussion with the independence conversation, is the loss of being able to make your own choices. Those who care about you ‘meddle’ in your life, tell you to ‘take a break’ and other completely reasonable requests like that. The majority of the time they are completely right but because this was not your decision, you resent this, and discontent emerges. Equally medical decisions whilst they are yours and the principal of ‘patient autonomy’ is still very much prominent often it feels like everyone is making these decisions for you, that these people are just more people to rely on, which again can sometimes feel like a loss of independence.
A final issue to consider is the way in which accessibility links to independence. Accessibility here is meant in broadest sense. If more people knew what to do when people had seizures, if people had ramps alongside stairs it could drastically increase independence. Likewise schemes such as medical ID bracelets, free public transport all enhance independence. For wheelchair users whilst they may have initially needed someone to help with pushing up hills, the fact that public transport is free means that the bus can easily be caught instead of needing help up the hill. Whilst this may seem such a little thing, independence is an upwards spiral, confidence improves, relationships improve, and overall life gets better.
Yet it is incredibly important to notice the positives that the loss of independence can provide. This may sound like a strange perspective to take however when talking we realised had it not been for loosing some of our independence things may be very different.
Firstly, the fact that you become more reliant on your friends actually strengthens many friendships rather than weakens them. You show your friends a different side to you- one which is more vulnerable and often requires you to open up and trust them far more than you would have to normally. However, this also means you see a different side to your friends, allowing you to see clearly just how thoughtful and compassionate they are, and this trust works both ways. Friends can then open up far more with yourself to and begin to rely just as much on you. Often the initial dependence merges into a ‘co- dependence,’ and allows for unbreakable friendships to be forged. The value of this cannot be understated, and is something that the three of us have all experienced first hand.
Losing your independence also brings into focus the value of the small things, as well. Your appreciation the littler things like being able to walk to the shops on your own, make your own dinner or get dressed independently. Living on your own isn’t always possible rather than the almost given that society portrays it as and other young people live it as, hence, when such tasks are accomplished it leaves you with a huge sense of pride and appreciation. This in turn can allows you to empathise with others much easier. Putting yourself in the shoes of those most vulnerable and in need is far easier when those are shoes you have walked in many times. In a world filled with selfishness and a disregard for others, these are qualities that are to be held with pride.
So, it is important to discuss independence for the honest conversations about the bad, and the surprising and important realisations about the good.
Originally published 16/7/2019