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The unknown truths of living with a chronic illness

Posted by Lauren Minicozzi on

Isolating. Lonely. Secluded. Scary. Debilitating.

It feels like the whole world keeps crashing down. You cannot catch your breath. Every time you feel like you have finally caught a break, you slide down that ladder. Back down to rock bottom. The prolonged and draining time it takes to make any sort of progression is taken away as quickly as it comes. Sliding back down that ladder and feeling that you have taken another 15 leaps backwards.

You are suffocated by constant guilt. Constant guilt that continues to eat away at you. The guilt for not being able to move. Having to stay in bed. Not being able to work. Not being able to look after yourself. Having to rely on constant support. You feel like you have been stripped away of any responsibilities. Of any independence. The feeling of being a child again. Like you cannot make decisions without gaining someone else’s permission. The voice in your head starts to play games. It starts to tell you that you are lazy. That maybe you are faking it. That you are not dying so you should be grateful. That voice in your head starts to scream at you and tells you to get over it. To go back to work and stop faking it. That voice allowing that guilt to consume you.

You start to second guess yourself. That maybe you could work. That maybe you’re not sick. That maybe it’s all a show. That you’re trying not to grow up. That maybe, just maybe today you could feel ‘normal’. But then the next day it hits you hard. Bed ridden again - not being able to move.

No one understanding what you are going through. Trying to push friends away as you do not want to burden them. You do not want them to worry about you. You want them to move on with their lives. You do not want to hold them back. You do not want them to waste their time with your concerns. Why would anyone want to be friends with the sick one? You have nothing to talk about as you don’t want your sickness to consume the conversation. You do not want to feel like you are boring them. You try to act like you are fine. Put on a brave face. Put on a big smile. Have this façade up so no one is let in. But sometimes this makes it worse as they don’t understand the pain you are going through. The pain you continue to fight against. The pain that can leave you bed ridden for a day, for a week, for a month. You force yourself up when you have to meet with them, but they do not see behind the curtains. Behind the closed doors. Nor do you want them to. The isolation you ultimately create for yourself to protect them.

You feel like you have to justify to them that you are sick despite looking fine at the moment, as they don’t understand. They can’t feel your pain. You feel they are questioning your every move. Knowing people are asking about you. What you are doing? How you are not working? It’s easier to just push everyone away. To push them all away and be by yourself. You feel you are unworthy of their friendships, like you don’t deserve them.

No one seeing how bad you really are. Not allowing anyone in as you don’t want to be a burden. So you keep everyone at arms length and continue living in your isolated world. You get frustrated when you try to explain to someone the pain, you are in or the struggles you are facing, as they don’t understand. They can’t relate.

It’s your loved ones that the façade is down for. But it is the loved ones that are then exposed to the frustration and anger bubbling below it all. Your loved ones seem to cop the brunt of it all. You seem to take it out on them despite them trying to help you. Trying to support you. This then brings on the guilt and you start to question why are you even here? That you are a burden on your family, and you should be alone. They don’t deserve to be treated the way you are treating them. But you cannot control yourself. You cannot control your actions. You don’t mean to take it out on them, but it just happens. The emotions that you attempt to keep locked up tight just seem to leak out.

 

The hardest part is when your family are trying to care for you, but you feel you have no power. You feel you no longer can look after yourself and that you need constant support and guidance. Once again feeling like a child. It’s the most demoralising thing.

Trying not to play the victim card but it is hard. Thoughts sweeping through your head, why me? Why can others go out? I am too young? What did I do to deserve this? Will I ever get better? As you start to question whether you will ever have your life back again.

Too scared to let anyone in you do not allow yourself to get close to a partner. You push everyone away. The thoughts taunting your mind that if you struggle to look after yourself, how do you expect to be with someone else. You feel you are not worthy of having a partner and that no one should have a sick girlfriend. Nobody wants a sick girlfriend.

You question whether you are any fun anymore. You can’t go out. You struggle to socialise. The pain gets too much, it’s hard to shift your attention away from it. But you don’t want to be the burden to others, and you don’t want to be the centre of the conversation. No one wants to hear someone whinge about their sickness when they are out. So, you isolate yourself and stay home. Avoid social contact and feel the only use you have is to just stay at home.

The pain in your joints becomes increasingly inflamed each day. The head fog consuming the little brain space you feel you have left. The tiredness kicking in. Sometimes you feel like a sook, as everyone is tired. Half of society is running on adrenalin so what makes you so special to take time off and rest? What makes you so special in comparison to the rest of society? There would be others sicker than you, but they continue to keep going. They continue to keep fighting. They suck it up and push forward. So why can’t you?

Each day you wake up you do not know how it will pan out. Some days you will be fine and feel you can go to work whilst other days you cannot move. Trying not to let guilt consume you is by far the hardest part. Trying to not let society’s opinions impact the way you feel about yourself.

But the truth is its hard. It is one of the hardest journeys to go down but unfortunately, we cannot control this. The only way forward is to continue to heal, rest when you need to and allow others to support you.

So, there you have it, what goes through the minds of those with a chronic illness and the inner battle they have within themselves.

Love from the Italian who loves to speak,

Lauren xo

#chronicillness #rawisbeautiful #ajourneytohealth #hardship

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