“Get well soon!”

That’s a common saying. All of us have heard it. But what if you have an illness that you won’t ever get better from? The most horrible part of having a chronic illness is that it’s forever, or 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 constant-ness, the all-of-the-time, every-single-darn-day-ness of it all.

And this is why it isn’t the physical pain that is the hardest to deal with. It’s the emotional pain that goes along with it that is 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 that 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 illness has a beginning, middle, and end that chronic illness doesn’t have.

In chronic illness, diagnosis is 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 is 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. It is, at times, too much to bear.

But the emotional load is a 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.

I feel exhausted from trying to be stronger than I feel, from trying to have a “normal” role in society.

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. Fear. Wisdom. Guilt. Strength. Empathy. Weakness. 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. Tell them you want to know how they really are, not the standard “fine.”

This is my life with chronic illness. Tell me yours.

“Ellie B.” is a patient.

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