The Reality Of Living With A Chronic Illness

Before I got sick I didn’t even know what a Chronic Illness was. Over 2 years later and I now know more about Chronic Illness than I ever thought I would. Over 2 years later I’m still fighting to get answers to what is wrong with me. Over 2 years later and I’m still fighting everyday to keep my body functioning.

This is the reality of living with a Chronic Illness, it comes in and turns your whole life upside down.

At the start you wake up everyday hoping that it’s gone, no more pain, no more nausea and that you can be you again. But it isn’t, so you keep telling your self not to worry that by Easter it will be gone and you will be better. And then Easter comes and goes and then it becomes by your Birthday, then by Christmas and so on and so forth until one day you just stop. It’s not that your not still hoping it will go away, it’s now just to painful to even let your mind go there. For a while your kind of in denial, it isn’t until your hear the words Chronic Illness that it really sets in.

You grow up believing that you go to the doctors and they can fix you. Try having a doctor tell you at 15 that you have chronic pain that isn’t going to go away and you just have to learn to live with it. Or breaking down in the doctors office because nothing is stopping your illness and your one step away from ending up on a feeding tube. To then be told that your too complicated and they don’t know how to help.

Everything that seemed so important when you were healthy seems so silly now, because all that matters is your health or lack there of. I have always been a bubbly and positive person, finding a way to turn lemons into lemonade. The hardest thing about getting sick wasn’t losing my health, my friends or teenage life. It was losing what made me, me and remembering the person you used to be and still trying to be but can’t. Because pain and illness changes you both figuratively and literally, it’s hard to feel happy and positive when your in constant, head to toe pain or when you can’t eat anything without not being able to move for hours afterwards.

Having to deal with the jealousy of seeing everyone else going to parties, getting jobs, learning to drive, going to school, having relationships, playing sports and just living “normal” teenage lives. Because it’s what you want more than anything in the world but can’t have. Because your trapped in a broken body and there is no escape. You grieve for the life you thought you would have and the person you used to be. Everyone always says that your high school years are some of the best years of your life and that those who don’t go to school are missing out. But what does that mean for the chronically ill teens that are stuck at home or in the hospital?

Not to mention the impact your illness has on those you love, it’s easy to deal with your illness effecting yourself. But when your Mum goes from your parent to your carer and you have to see the pain and worry in her eyes are she is having to watch your health yet again decline at a scary rate. And having to deal with the guilt because even though it’s not your fault your sick you feel responsible for the pain it causes those around you.

It’s the ever growing fear of what the future will hold for you and your health. Because even when you are at a manageable stage with your illness, there is always that reminder in the back of your mind. That you have no say over your health, it’s always up and down and you can’t control when or how bad that down will be.

You try to figure out your plans for the future but the reality is you can’t even really plan what you are going to do in the next hour or day let alone in months or years. Because one minute you can be fine and the next anything but.

People always ask you how you cope and say they never could. But the reality is that you don’t even know how you cope either. You don’t have a choice you just have to deal with it. Sometimes it’s gets to be too much though, when the pain gets too high or you feel so sick, all you want to do is scream and cry but you can’t even do that because it will hurt too much.

This is the reality of life with a Chronic Illness, it’s painful, exhausting, defeating and really freaking hard to deal with. This is my life as well as so many others with every single day there are no holidays, no breaks or magical pills that make it all go away. It becomes your normal, you forget what it’s like to be healthy and it not wake up in pain everyday Even when your laughing, talking or happy your still sick and in pain. Your just trying to get those few seconds where you are laughing enough, or truly engrossed in doing something you love that you forget the battle going on within your body.

– Elina xx

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  1. I really feel this post… there are no breaks from living with chronic illness … no holidays – I really really felt that. Lately I have been feeling like I just need a break, I don’t know the last time I felt truly relaxed and my illnesses are pretty much to blame :/ You are so strong Elina xx Lots of love

    1. It was the first time I didn’t try to sugar coat what life with chronic illness is really like. I wanted to share what I would have wanted to hear when I first got sick. That it does suck and its ok to struggle with it. I was tired of healthy abled bodied people acting like it was no big deal to have to manage, because all that did was make me feel weak for struggling with it. I wish more than anything that I could take your illness away so you could have a break, I know how much is affects day to day life. But just know that you are doing freaking amazing to manage and you should be really proud of yourself because I know I am!
      – All my love, Elina xx