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To the Friend Who Asked, 'Isn't It Scary?' to Live With Chronic Illness

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It started as a simple question a friend asked:

“Isn’t it scary?”

I never thought three words could make me think so hard. Is this illness scary? I want to answer honestly, so I have to say yes. I see doctors more than I see my own friends. Either I’m constantly in and out of the hospital or I see my spoonie family going in and out of the hospital. I constantly feel like I let people down when I don’t have 100 percent to give. I have lost more friends than I can count. I constantly feel invisible or forgotten about. I could react to anything and have an allergic reaction. I could stop breathing. I could stop walking. I could pass out while doing anything. I have pain so severe that somethings the only thing to do is to scream or cry. Yet a lot of people don’t believe I am sick or don’t believe it is serious. I have a chronic illness and it is scary. Yet as scary as this is… This is my life. I have become used to it.

Here is the positive side to my life:

I see doctors more than I see my own friends because theses doctors might be able to get me back to normal. My friends and I may have to go to the hospital (which is an extremely hard experience) but at least we come out alive. I constantly feel like I let people down when I don’t have 100 percent to give, but love to see their smile even when I only have 5 percent to give. I have lost more friends than I can count, but have also found who my true friends are. I have lost more friends than I can count but I have also made so many who go through the same struggles I do.

I constantly feel invisible and forgotten about, but that gives me the drive to bring awareness to those living with invisible illnesses. We should not be ignored. I could stop breathing, stop walking, have an allergic reaction to anything, and I am constantly in severe and sometimes debilitating pain. There is nothing positive about any of that. There is nothing positive about your body attacking you. These possibilities are not something I can control, but I do know I have amazing support. If any of these things happen, I know that I have people who would be by my side to fight it and survive it. I have been blessed with an amazing family who have been by my side through it all.

A lot of times people with a chronic illness only show you one side of the story. They want you to see them smiling, being positive, and living their life to the fullest despite their illness. Yet the reality of our lives is so much more than that. We battle our own bodies and it is a 24/7 battle. Our illnesses can take us down, make us miserable, and cause us to question why we even continue to battle against it. Every one of us battles this illness for our own reasons. So yes, this illness is terrifying, but it has also taught me a lot about myself. It has shown me that I am strong and can handle anything my life throws at me.

Keep smiling because life is a beautiful thing and there is so much to smile about. This battle is long from being over. That’s not OK, but it has to be because I can’t change that fact. All I can do is stay strong. I have an amazing support system through my loved ones, I have an amazing God who I believe is constantly giving me the strength to continue fighting, and I have the will power and determination to come out of this on top. Maybe I won’t be healthy ever again. Maybe this is what my life is going to be like. But if I can help even one person find the determination and strength to fight their battle then I know that it is worth it.

So yes, this is more than scary. It’s terrifying.

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Originally published: November 21, 2016
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