Its Okay to be Sick

You know what? No one ever told me that. Ever. And I realized it’s something that I needed to hear.

See, we’re kind of taught that it’s really not okay to be sick. That you need to apologize for being sick. That you need to hole up and hide away when you are sick. I think that subconscious belief ingrained in us does a lot of harm. We feel like we need to say sorry – sorry for being a hassle. Sorry for missing a get together. Sorry that I don’t have good news for you.

That last one is especially prevalent as the holidays approach. I’m asked “Are you feeling better?” all the time. And my knee jerk reaction is a “yup!” until they say “Oh. Because I heard you were in the ER.” and I’m like “Well…..yeah. I had a really bad pain episode….I’m sorry.” I want very badly to say “Hey everyone guess what?! I’m 100% better and normal just like you!” When they ask if I’m “better” they have such a desperate hope in their eyes that this is finally when I’ll reveal my miracle recovery, a story of triumph and overcoming this illness.

And I want to say sorry that I am not an inspirational YouTube video yet.

That’s awful, though. So I wanted to take a minute before the zero hour of the holidays to tell you all a few things I wish someone would tell me.

1. IT IS OKAY TO BE SICK. Seriously. Don’t apologize. It’s a neutral fact, it’s not good or bad. It just is, let it be.

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2. Its okay to take a nap after the Christmas morning festivities. You probably ate a big special breakfast and woke up early – you spent time with your loved ones, you’re probably still in jammies, take a nap. It still counts as celebrating, especially if you fall asleep in front of a roaring fire and a Rankin/Bass TV special.

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If it’s good enough for Santa, it’s good enough for you.

3. Its okay to take medicine at the table. If you don’t act guilty about it, probably no one will notice. And if they do, you can say “I’m fine, it’s just time for my lunchtime/dinnertime/breakfast-time pills!”

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4. Its okay to lay down while you’re hanging out with friends and family. It just shows you’re comfortable. If in doubt, take a cue from the family toddlers – they’re so comfortable they’ll poop right in front of you. Don’t go that far, but take the lesson.

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See? All smiles. So calm.

5. Its okay to not act sick! If you’re having a good day, have a good day! Sometimes I feel like I ought to reign it in or else people will stop believing I’m sick. Life’s way to short and Christmas is way too wonderful – if you’re feeling up to it, let it all out.

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6. Its okay to not wear make up. I don’t. Who cares? It’s bad for you anyway.

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7. Its okay to not stay up all night. When family visits you’ll probably get to talking and not want to go to bed, but it’s good for you and them to stick to a normal-as-possible sleep schedule. If they’ve been traveling, they’ll be asleep as soon as their head hits a pillow no matter what time it is.

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8. Its okay to listen politely to family’s medical advice. Feel free to share your own thoughts but don’t fight or turn it in to a lecture. When your obnoxious great aunt tells you you’d be cured if you gave up sugar or gluten or tried acupuncture, smile and say “Thanks. I’m really glad my family looks out for me like this.” or “Thank you for thinking of me! Your support means a lot.” Christmas Day is not the day to go Health-Activist-Expert-Nazi on everyone. See the best in people’s good intentions. Forgive and love freely. There will be other days to “march in to battle.” Lay down your weapons on Christmas.

9. Its okay to feel sad, even when it’s Christmas. Don’t feel like you’re missing something or messed up when the world seems so happy and you feel sad – it’ll only make you more sad! Let yourself feel sad when you need to. Watch those sad Christmas commercials, sit by the fire and think, say a tearful prayer. Sadness is, like illness, neither good or bad – it simply is. Let it be. Get it all out – it’ll be much easier to move on to happier things.

10. Its okay if you don’t have much money. I switched from full time to freelancing and, while we were prepared for the financial changes, we didn’t factor in all the Christmasing that would happen. Decorations, gifts, special food – we spent basically all we had without even realizing it! Luckily paychecks have since rolled in. But we had been planning on doing the “angel tree” thing and getting gifts for a needy kid. And I would really have loved to get presents for more people than we did – the kids I babysit, our friends, distant relatives. It just didn’t happen this year. It’s hard to want to give and help people and to not be able to. Just remember that money comes and goes – maybe this year you were the needy or poor, but maybe next year you’ll be the one giving to the needy or poor. Roll with the tide, there is a time and season for everything.

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11. Its okay to shop online. As charming as it can be to walk through a mall with christmas decorations everywhere, it may not be worth braving the crowds. People can be cold and mean when they’re in the hustle and bustle like that. Only go out shopping when you’re relaxed and in no hurry, and again, be ready to forgive and love freely – you’ll be doing a lot of it.

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12. Its okay to get excited! A lot of people pooh pooh how big Christmas is getting. They hate the songs on the radio and the early decorations and peppermint everything. Fine. It’s not for everyone, but if you love it, LOVE IT. Listen to the Christmas radio stations, sing along to those overplayed classics, watch Christmas movies, eat your peppermint everything. Don’t buy in to thinking that you’re giving in to commercialism or forgetting the REAL reason for the season. Christmas is like Disney World – it exists as a giant permission slip to be happy and enjoy things. Like illness, happiness is sometimes thought of as something to be hidden away inside. And it’s probably good that you know how to control yourself when you’re excited day to day. But you need to woohoo and cry tears of joy every once in a while! It’s healthy.

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I think I’ll stop at 12 – it’s a Christmasy number. What are some things you wish someone would tell you? Share them in the comments – because I bet you’re not the only one who needs to hear it.

Book Review: The Directive

A while back I did an interview with author Rosa Fontana about her novel “The Directive” and her life with Crohn’s. You can read her fabulous responses here. But her book is so wonderful that I just have to do a proper review of it too. If her interview didn’t convince you that you HAVE to read this book, I hope this review will.

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I can’t think of a single thing I didn’t like about this book. And I can think of many specific things I loved about it. Somewhere in the very first chapter I had to stop for a moment to savor how much I was enjoying reading this. It reminded me why I love to read and I promised myself to read more from that moment on.

So what’s the story? At first, it’s just a glimpse into the life of a fairly normal girl. She’s extremely introverted, which of course resonated with me. And any spoonie will appreciate right from the onset the little details used to describe emotion. Being a book about Crohn’s, Lynne, our main character, feels a lot of her emotions with her gut. It’s a unique motif that’s easy to relate to whether you have a bowel disease or not.

Another thing I love about our protagonist is that she’s an English major, so she makes a lot of references to literature and poetry. I LOVE that. Lynne is such a real character, she feels like someone you’re sure you’ve met before. The other main character, Peter, is also very fleshed out and three-dimensional, but Peter is more like someone you wish you’d met. Everyone wants to be a Peter, and we’re all Lynnes. That’s perfect, because Lynne wants to be more like Peter too. He’s a lot like Peter Pan actually – a dream boy. Endlessly positive. Full of life.

She meets him at the hospital and he’s got Crohn’s as well. He’s been sick a long time and has gotten very good at it – if you’ve had a chronic illness for a while you’ll know what I mean. Lynne, on the other hand, is newly diagnosed and adjusting. These two states juxtaposed are so powerful when you’ve been in both places. And for anyone who has a life free of illness, this is a great look into the different “stages” of chronic illness.

This is an amazing tool to simply understand chronic illness, specifically Crohn’s. It is NEVER boring and never feels like a textbook – every bit of information has weight to it because you’re worried about Lynne. It never just throws facts and figures at you – you find them out in consequence. Life is on the line. You’re educated exactly as you would be if it was your own life on the line, and you were looking for answers. What a brilliant way to educate people. Fiction is a powerful tool. Unlike biographies and non-fiction I’ve read about people’s lives with illness, this is entertaining. If you write out every detail of your experience, however emotional it was for you, it won’t hook people and pull them in. It can – I believe biographies can read a lot like fiction – but it seldom does. Stopping to explain is the worst way to teach. People love stories. Make them feel. Make them WANT to know more because they have a stake in it. This book does that expertly.

Got a bit sidetracked there – CAN YOU TELL I LOVE THIS BOOK? So back to the story. Lynne ends up in the hospital and meets Peter. While doctors and nurses teach her how to manage her illness, Peter teaches her how to thrive with it. And in case you didn’t know, Crohn’s is actually a deadly disease. There are lots of life or death moments in this story. Lynne has to make harrowing choices that could literally kill her if she chooses wrong.

But wait! There’s more! Because chronic illness is never simple. Lynne must also make choices about her education, something dear to her heart that makes her feel like a functioning part of society. Despite doing her best, she ends up having to drop most of her classes. And then there’s her family life. Her parents are divorced and, being new to hospital life, aren’t the greatest support group. Especially seeing them next to Peter’s loving family, you can really feel Lynne’s frustration with them. They don’t understand her illness, they don’t know how to be there for her, and that’s something really real. You don’t quite want to hate them, but you’re close. You wish they would just know what Lynne needs! Why can’t they just — boy, this is hitting close to home!

BUT WAIT cause there’s a ton more that I can’t even write about because I don’t want to spoil anything for you. What I will say is that this book has got some twists – yes, twists plural. You feel like you kinda know what kind of book this is – she gets sick, she goes to the hospital, she learns warm fuzzy life lessons. BUT THEN— I can’t spoil it. I can’t. You just have to read it. The last few chapters are a trip. You’ll be like whoa….WHOA…..WHOOOOOOOOOAAAAAAAA WHAT IS HAPPENING OMGGGGGGGGG. Yes. Just like that.

GO READ IT. STOP READING THIS AND GO READ IT NOW.

CLICK HERE TO BUY IT ALREADY.

Recharge with 50% off this new pillow * Great for gifting!

Hey guys!

Are you cutting it close this Christmas? I am. I still have a TON of shopping to do! Well never fear – let’s knock one gift out right now. This is perfect for just about anyone – chronic illness peeps will get a kick out of it as much as your geek-chic, punny friends will.

And I’m sure I’m not the only one who’s wallet is letting out sad, small coughs about now. So this pillow is 50% off! Just use the code 4GIFTSFORALL – that code will also get you 20% off everything else in my store! Today is the last day zazzle can guarantee pillows by Christmas, so this sale is for TODAY ONLY!

Not only will you be getting a marvolous Christmas present for someone, but you’ll also be giving Do I Look Sick a little Christmas present too! Remember that all proceeds I get from sales go straight into this website and therefore, back to viewers like you. Thank you. ;)

Merry Christmas everyone! Now if you’ll excuse me, I’ve got a bajillion and three things to do in the next two weeks. See ya!

Harrison Bergeron by Kurt Vonnegut, Jr.

I’m kind of cheating and posting a short story today. The holidays are in full swing and I’ve been busy as a bee. I’m also about to transition to a new doctor – which, as I’m sure you know, is a very stressful process. So I don’t have time tonight to write you a “real” post.

That’s why I’ll be posting the text of a short story that is near and dear to my heart. I first read this story back in junior high and, as I blossomed into a full-fledged English major, it has kept its spot among the “classics” in my mind right along Edgar Allen Poe’s short stories. Now that I’m coping with chronic illness, I think on this world quite often. Particularly the image of the ballerinas – I used to be a dancer. And sometimes I feel like I’m trying to perform a ballet with weights on my ankles and arms. Chronic pain feels a bit like that.

I also smile when it describes Harrison – who is the most severely handicapped. He wears a hideous mask and weights and speakers to disrupt his thoughts because he was naturally THAT smart, strong, and talented.

I like to think that perhaps God hands out illness in a similar fashion – those of us who are just a bit too awesome need a little handicapping, to make it more fair for those poor normal people. ;) It’s a fun thought, anyway.

So without further ado, please enjoy Harrison Bergeron by Kurt Vonnegut, Jr. and let me know what you think of it in the comments!

handicapped_ballerina_by_thunderscape_7-d5tgwo8(click the photo for more information on the artist)

THE YEAR WAS 2081, and everybody was finally equal. They weren’t only equal before God and the law Continue reading