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5 things you need to know if you’re living with a chronic illness

Sarah Hannah, Fellow Spoonie

30 October 2017

Fighting a daily battle with your own body can be exhausting, debilitating and at times, downright depressing. It’s easy to get caught in a loop and to lose sight of what you’re fighting for, especially when your illness is pushing you to your limits and you’re feeling particularly up against it. That’s why we’ve put together five gentle reminders for you; take a breath, remind yourself that it’s okay not to be okay, and when you’re ready, put your invisible cape back on.

1. Sometimes, no amount of sleep will ever feel enough

It’s a truth well acknowledged that aside from the pain, one of the most debilitating and frankly annoying aspects of having a chronic illness is the fatigue. From my own experience, I’ve found that there are times where the constant tiredness has induced a brain fog that makes me so exhausted that sometimes I actually forget what I’m saying, right in the middle of my sentence… Needless to say, it’s not ideal! While some (myself included!) might push for ‘powering through’, it’s important to realise that it’s okay to stop. It’s okay to have pyjama days, it’s okay to take afternoon naps and it’s definitely okay to give your body a break.

2. It’s okay to ask for help

We all like to think that we know what’s best for ourselves, and often we’re right. But asking for help doesn’t make you weak – it makes you strong. If you can put your hands up and admit that you need someone to help you out then as far as we’re concerned, it makes you even braver and its nothing to be ashamed of.

3. It’s good to talk about it

Having a chronic illness is, at times, isolating and upsetting, especially if you have it at a young age. It’s sometimes easier to force on a smile and keep how you feel about your illness to yourself. But the truth is that, even if nobody else can relate personally to what you’re saying, it’s better to talk about how you feel. When you have an illness that attacks you physically, it is easy for it to get to you mentally too. Talking about what’s going on allows you to support yourself mentally, even if it doesn’t take your physical pain away, and often it enables the people around you to have a better understanding too.

4. There will always be ignorance

Unfortunately, there will always be the ignorant idiot who tells you that you’re ‘too young to be sick’ or that you ‘don’t look sick’. You’ll probably encounter the delights of being told to try ‘positive thinking’ and you can guarantee that someone you’ll speak to will have a friend of a neighbour’s uncle’s wife who had the same condition as you but is now ‘cured’. Sometimes it’s easier said than done, but instead of getting upset or angry (though you’re well within your rights to!), it’s often kinder to yourself to simply walk away. One day there will be enough awareness of invisible illness that people don’t jump to conclusions, but until that day comes, remember you are a warrior and it doesn’t matter what any uneducated bystander thinks.

5. It’s not your fault

It can take a long time for this one to sink in, and it can be a constant battle. Chronic illness is one of the few things in life that does not judge or discriminate – if it decides it’s having your body, then it’s having your body. It’s not your fault that it chose you, and for every day that you keep fighting you deserve a huge pat on the back. You are a spoonie warrior – so make sure you always wear your invisible cape!

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