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What Life With Chronic Illness Is Really Like - Chronically Whole

What Life With Chronic Illness Is Really Like

June 2, 2016 | Posted in: chronic illness; support, Chronic Life

“Get well soon!” It's a common saying. All of us spoonies have heard it. But what if you have an illness that you will never recover from? The hardest part of having a chronic illness is that it's FOREVER, or at least for a very long time.

Unless your personal miracle comes, your illness will always be with you. There isn’t an end in sight. There’s just adjusting – to the pain, the tiredness, the medications, the constantness, the all of the time, every single darn day-ness of it all.

And this is why often it isn’t the physical pain that's the hardest to deal with. It’s the emotional pain that goes along with it that's the absolute hardest part of it all.

The guilt, the idea that you are a burden to those around you can cause you to feel you are being crushed, that illness is swallowing you whole.

How do you fight this emotional suffocation when the root cause of it isn’t going to leave you?

If you have a “normal” illness you see a doctor, get treatment and get better. Normal illnesses have a beginning, middle, and end that chronic illnesses don't have.

In chronic illness, finding a diagnosis can be difficult. Symptoms can be confusing and varied. It can be hard to quantify a feeling of weighted down limbs or a tiredness that won’t go away. Try explaining to a gazillion different doctors that your mind is constantly going, buzzing, not stopping, while simultaneously feeling like it’s full of sludge.

Being this kind of sick means living with the unknown. Every day is different. It’s hard to plan when you have no idea how you will feel at any given moment. It’s easy to feel lost when life is full of constant questions with few answers.

When you have an autoimmune disease your body is literally fighting itself. At times, it is too much to bear.

But the emotional load is the far greater thing to bear. Personally, I feel like my body is a failure. It’s always letting me down and not letting me do everything I want to do. This continues to be my biggest struggle with my own health issues, and I don’t see that ever letting up, regardless of how strong or how weak I am at any given moment.

I feel exhausted, always, from trying to be stronger than I feel, from trying to have a normal role in society, even if normal is a myth. And it truly is for me.

Those are the bad days. On my better days, I push through easier, I enjoy life more, I laugh, smile and love more, because just like the bad days, the good days don’t last forever. Every day isn’t good, but there’s good in every day.

Being sick makes you a lot of things, some negative, and some positive.  I feel many things. Fearful. Strong. Guilty. Weak. Happy. Sad, and everything in between.  You’ve got to take the lows and the highs.

What is living with a chronic illness like? That’s just me, this story. Talk to others you know with an illness. Talk with anyone you can. Remember that talking about things is how we learn. Don’t keep quiet! Share your knowledge, your strength and your fight with the world. Keep on keeping on, my friends.

This is my life with chronic illness. Tell me yours. Click To Tweet

What Like Is Like With Chronic Illness



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Ellie is a 44-year-old woman living in South Carolina. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.

1 Comment

  1. Amy Tobon
    June 3, 2016

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    Ellie, you have expressed what so many of us feel on a daily basis, and jus cant say….thank you!

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