Please Don't Say 'I'm Sorry' When You Hear I'm Chronically Ill


I have lived with chronic illness the majority of my life, and have faced it in a head-to-head battle against death for the past five years.

And some of the top two words I hear are: “I’m sorry.”

I’m sorry you’re in a flare.
I’m sorry you lungs are acting up.

I’m sorry your health limits you.
I’m sorry you’re in pain 24/7.

I’m sorry you’re sick.

I’m sorry life hasn’t gone according to your plan.

I know they are well-intended, but after so many “I’m sorry,” statements, you begin to internalize that pity.

Lately, I began to look at all I endure daily. All that I’ve suffered through. All the times I’ve heard “I’m sorry.” And I began to feel sorry for myself too.

Society has this view that when you’re sick, all you can be is sick.

You can’t be successful.
You can’t be happy.
You can’t be adventurous, or envied.

All you can be is someone others are “sorry” for.

And it isn’t until lately, after I watched some amazing talks by Claire Wineland and did a lot of reflecting, that I realized that way of thinking is absolute garbage.

Because you know what?

I’m not sorry I’m sick.

Sure, being sick absolutely sucks. I wouldn’t recommend it.

But being sick isn’t who you are. It’s just something you happen to live with.

I’d be lying if I said my illness hasn’t limited me. It’s taken what I thought having a “successful” life meant, and absolutely tipped it on its head.

Because of my illness, I’ve learned that I carry a strength most healthy people would envy.

Because of my illness, I’ve learned life is a gift that shouldn’t be wasted, so I treat it accordingly.

When the opportunity for adventure comes, I take it — like one Halloween when I accidentally took my friends to a rave. Instead of leaving, I ended up on stage, dancing with this guy dressed as Superman. Then I took a running leap off the stage and nearly blacked out because both of my ankles attempted to dislocate.

I relish each opportunity I have to go on an adventure, even though I will physically have to pay for it later. I make sure every ounce of pain I’m going to feel for having fun is worth it.

Because of my illness, I can find beauty and laughter in even the most mundane or painful of experiences.

Because of my illness, I found my voice. I found my passion. I want others to know that a life full of pain and struggle can still be a beautiful and amazing life.

It may not be to an audience of thousands, but I’ve learned that what I have to say and what I write, matters.

Through sharing my experiences, others can feel less alone, and know they can get through whatever they’re going through.

My life may not be what others view as “successful.” But I’m dang proud of who I am and what I have accomplished.

And my future, however long or short it may be, may or may not be the world’s version of “successful.”

But it will be beautiful and worthwhile, because  I work to make my life something I love and am I’m proud of.

Not many people can say that.

So when it comes to my chronic illness, I love your support.

But when it comes to chronic illness, I don’t need anyone  to say “I’m sorry.”
There is nothing to be sorry about.

Life may have dealt me a crappy hand, but I’m playing the most out of the cards I’ve been given.

#smileon

 


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

Boy in hospital bed sitting up looking to the side

Before I Became a Mom to a Medically Complex Child

Before I became the mom to a medically complex child, I didn’t know I would have to fight with medical professionals just to have my concerns acknowledged. I didn’t know we would spend as much time in hospitals as we do out of them. I didn’t know what it felt like to be told my [...]

How I Approach Life Differently Since Parenting a Medically Complex Child

The past year has been one of reflection, especially as a parent to a medically complex child. I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital [...]
10 Ways Anxiety 'Shows Up' With Rare Disease

10 Ways Anxiety 'Shows Up' With Rare Disease

If you have a rare disease or parent a child who’s rare, it’s extremely common to experience anxiety. In fact, a staggering 82 percent of people facing rare disease deal with anxiety on a daily basis. Having anxiety is an important part of the rare experience we need to start talking about. Mental health matters, and [...]
two women talking over coffee

5 Things to Remember If You're Trying to Explain Your Rare Disease

Do you think explaining your rare illness to someone new can cause you more anxiety and flares? Dealing with any chronic illness can be anxiety-inducing and isolating when others don’t understand. It is very discouraging when we can no longer live a “normal” life, but we “look normal” to the world. It becomes even harder [...]