I’m off work right now thanks to my good pal lupus, so I thought now would be a good time to share my ultimate chronic illness reading list with you guys. There’s no better way to pass the time than to get lost in a good book (assuming you have already watched everything on Netflix) and reading can be very therapeutic for someone who is sick. It feels so reassuring to open up a book and read lines written by someone who understands what it is you are going through. Validation is often very important for those of us with invisible illnesses who feel like we spend 80% of our time trying to convince other people that we are actually sick. Reading a book by someone who is also sick allows you to drop all pretences and just be yourself for a change. You can put your guard down for a few hours and burrito yourself in a fuzzy blanket of support and shared experiences.
Now, not every single book on my list is written by someone with a chronic illness or is specifically about a chronic illness. Anyone who knows me or has ever come across my blog knows that I’m borderline obsessed with semi-awkward female comedians who tell it like it is. I’m talking Mindy Kaling, Amy Poehler and Tina Fey. So no surprise here, those three authors will be found in this list. If Amy Schumer’s memoir was already published I bet it would also be on this list. Do they refer specifically to dealing with a chronic illness in their books? Nope, not really. But everyone has their thing. Their demon, as Amy Poehler would say. And advice about how to cope with your thing can certainly be useful for those of us whose thing is an incurable disease that is trying really hard to kill us. So without further adieu, here’s the ten (in no particular order):
1. LET’S PRETEND THIS NEVER HAPPENED BY JENNY LAWSON
“Because you are defined not by life’s imperfect moments, but by your reaction to them. And because there is joy in embracing – rather than running from – the utter absurdity of life.”
That’s the line that got me into blogging. I actually put the book down after reading that sentence and signed up for Word Press. I was at a point in my life where those imperfect moments were piling up and I needed to make sense of them. And then I picked up this book and read that line. I realized that I wanted to be remembered for how I reacted to the imperfect things, not just for being the girl who had those things happen to her. So I started writing and telling people my story. And I didn’t necessarily think it was a story that anyone would want to read or share with others, but I knew it was a story that I needed to tell for me. And this book helped me realize that I wanted it to be a pretty funny story, because I wanted that to be my reaction to sickness. I wanted to laugh in the face of it.
2. YES PLEASE BY AMY POEHLER
“Hopefully as you get older, you start to learn how to live with your demon. It’s hard at first. Some people give their demon so much room that there is no space in their head or bed for love. They feed their demon and it gets really strong and then it makes them stay in abusive relationships or starve their beautiful bodies. But sometimes, you get a little older and get a little bored of the demon. Through good therapy and friends and self-love you can practice treating the demon like a hacky, annoying cousin. Maybe a day even comes when you are getting dressed for a fancy event and it whispers, “You aren’t pretty,” and you go, “I know, I know, now let me find my earrings.” Sometimes you say, “Demon, I promise you I will let you remind me of my ugliness, but right now I am having hot sex so I will check in later.”
My big demon is lupus, but I also have smaller demons that hang around me because of lupus. So for those of you Supernatural fans lets say that lupus is my Crowley, and other issues like body image issues, lacking confidence, and feeling sad sometimes are Crowley’s demon henchmen. That quote from Yes Please helped me a lot when I had a huge internal battle every time I looked in the mirror and saw Crowley’s right hand man, Mr. Why Are You So Fat Lisa?, a demon who poked his head around quite often when I was on prednisone. Strange name for a demon, I know. I had gained weight and just didn’t look or feel like myself anymore. And at times it seemed to consume me, but after I read this book I found it a little easier to look in the mirror and then just shrug it off. That quote helped remind me that that one demon was just one little part of me. Aside from Amy spouting amazing wisdom all throughout Yes Please, the book is also just a hilarious, very fun ride to go on with her. Ultimately, Yes Please is like your really cool single aunt who travels a lot. It spins fantastical tales about that drunken week on that Contiki holiday, and it also comforts you when your first boyfriend breaks up with you and promises that it’s his loss.
3. AWKWARD BITCH BY MARLO DONATO
“I would not change my life for anything. I have been through too much. I have learned too much. Now I know what I am made of.”
This book changed my life, for real. I spent years going to doctors with my myriad of symptoms and could never really pinpoint the real reason I was feeling the way I was feeling. During the “you maybe probably almost definitely sort of have MS” days I came across this book online and ordered it. When it arrived at my door I devoured it. I was seriously sitting there in awe with my mouth gaping open while I flipped through the pages. “This woman is me!” I kept saying out loud. I made my friends and boyfriend read some of it to understand me. She walked me through her MS diagnosis and treatment. She showed me that while having MS is really hard you can still do the things you want in life, you just have to be a bit adaptable. Marlo proved that you can be sick and fabulous. Reading this book lifted something very heavy off my shoulders and chest. It felt like I could breathe again. Someone understood what I was going through. I didn’t end up keeping that MS diagnosis (team lupus!) but I still return to that book on days when I need a little push. It’s perfect for anyone with a chronic illness, or anyone with a friend or loved one who is sick. It’s also perfect if you’re healthy and you’re just one of those people who likes reading a good book. She has a second book coming out soon which I’m very excited to read!
4. HYPERBOLE AND A HALF BY ALLIE BROSH
If you have a mental illness like depression or anxiety or a chronic illness like lupus and you like to laugh then you must read this book. It’s a mixture of comics from Allie’s website along with some stories. Allie gets me. She gets you. She just gets what it means to be a human being. This book will probably make you laugh until you cry. Or the other way around. Also, she totally understands my struggle with cake:
“I had tasted cake and there was no going back. My tiny body had morphed into a writhing mass of pure tenacity encased in a layer of desperation. I would eat all of the cake or I would evaporate from the sheer power of my desire to eat it.”
5. THIS IS HOW: HELP FOR THE SELF BY AUGUSTEN BURROUGHS
“Do not wait for the healing to arrive. It will never come. The holes will never leave or be filled with anything at all.
But holes are interesting things.”
No joke, I actually bought extra copies of this book to hand out to friends in case they ever needed a pick me up. This is a must read for anyone struggling with anything. That may sound vague, but Burroughs really manages to offer fresh, fun advice on anything from body image issues to the death of a loved one. This book is a great side-kick. It can make you laugh and cry at the same time. It’s one of those self-help books that pokes fun at the idea of the self-help book. It is essentially everything I want when I get in a head space where I find myself wandering a bookstore looking for help. Everyone should read it.
6. IS EVERYONE HANGING OUT WITHOUT ME? BY MINDY KALING
“I’m only marginally qualified to be giving advice at all. My body mass index is certainly not ideal, I frequently use my debit card to buy things that cost less than three dollars because I never have cash on me, and my bedroom is so untidy it looks like vandals ransacked the Anthropologie Sale section. I’m kind of a mess.”
You all know how much I love Mindy Kaling. I don’t think anyone has done Nora Ephron so well since Nora Ephron. She has a universality about her writing that makes everything she obsesses over turn out to be the exact same thing we obsess over, that one thing we always assumed we were the only one who worried about. So there’s no such joy for me as there is when I open up a Mindy Kaling book and get swept away in her concerns which are also my concerns. And it’s nice because it reminds me that although I do have this one big concern (el lupus) at the end of the day I am still a twenty-something girl who also worries about things like which shirt to wear with my skirt and did I remember to put the cake back in the fridge because I really like when the chocolate icing is cold and not runny which is exactly what happens to it in the summer if I leave it on the table all day. This book is not about a chronic illness, it’s just a wonderful book to read for a laugh and it’s a great reminder that you are more than just your illness and that you aren’t alone because there’s this American sitcom writer out there who is just like you.
7. BOSSYPANTS BY TINA FEY
“It will never be perfect, but perfect is overrated. Perfect is boring on live TV.”
When I was a kid and things got overwhelming, or maybe just boring, I would do this thing where I pretended my life was a television show or a movie. And by “when I was a kid” I mean “just ten minutes ago.” I have this saying about lupus, that most people have about almost everything in the world because it’s a very overused saying, and it goes like this: “NEVER A DULL MOMENT, HUH?!” From one day to the next I never know what is going to happen with my body. And sometimes that can be dramatic as all hell. My immune system is a total diva, like the “only blue skittles” level of diva. Okay my immune system is Bieber. So as a coping mechanism I sometimes think about what my life would be like if it were a t.v. show and I realize it would make for some pretty good television. It would be Parks & Recreation meets 30 Rock meets Kimmy Schmidt meets The Mindy Project meets ER (the early Clooney days). And now I’ve forgotten the entire point of this blog post. Oh yeah, books you should read if you have a chronic illness. Read Bossypants if you have a chronic illness or if you don’t, whatever. It’s just a really funny, wise book written by someone who is probably a god. Tina Fey has written one of my favourite television characters ever: Liz Lemon. Everything about Tina Fey and her characters is so relatable that you can’t help but feel a little bit better about yourself when you read her writing. You come away from reading Bossypants the same way you come away from an episode of 30 Rock, thinking “ah yes, these are my people. I fit in somewhere.”
8. I’M JUST A PERSON BY TIG NOTARO
“The day I was discharged from the hospital after my double mastectomy, I was ordered to take it easy, which made sense because I was sewn up, bandaged, and in a lot of pain, but instead I went to the Stand Up to Cancer benefit TV taping that I had been invited to as a special guest of the producers. I didn’t want to be halfway between not better and better. I wanted to go from cancer back to my normal life without missing a beat. Watching everyone socialize at the after-party made me feel normal for a moment. No one knew that a couple of hours before, I’d been at the hospital, chest-deep in cancer. But soon I began to feel separate from everyone, like I was in a fish-bowl, or too young to play with the big kids. Waves of light-headedness, weakness, and nausea came over me, and standing up became nearly impossible. I didn’t want to be standing up to cancer; I wanted to go lie down with it.”
Full disclosure: I am only 1/3 of the way through this book because it just came out on June 14th and I only bought it a few days ago. But I’ve been obsessed with Tig Notaro for a few years now. If you don’t know her and you like funny things PLEASE go to iTunes and find the audio of her performance at Largo in Los Angeles that took place just after she found out she had double breast cancer. It’s called Live. Boyfriend played it for me once a few years back because he knew I really liked when people could be funny about illness, and I was immediately blown away by how funny and dark it was. We were lucky enough to get tickets to see Tig perform live in Dublin on our trip a couple years ago and it was one of the most amazing nights of my life. Anyway, her book is about how she almost died from C-Diff, then her mother died, then she got double breast cancer, and then she went through a break up. It’s all very heavy stuff but written in a very dry, funny way. I adore her so much.
9. FURIOUSLY HAPPY BY JENNY LAWSON
“When you come out of the grips of a depression there is an incredible relief, but not one you feel allowed to celebrate. Instead, the feeling of victory is replaced with anxiety that it will happen again, and with shame and vulnerability when you see how your illness affected your family, your work, everything left untouched while you struggled to survive. We come back to life thinner, paler, weaker … but as survivors. Survivors who don’t get pats on the back from coworkers who congratulate them on making it. Survivors who wake to more work than before because their friends and family are exhausted from helping them fight a battle they may not even understand. ”
As you can probably tell, Jenny Lawson is my favourite person on the internet. I mentioned earlier that she is one of the main reasons I ever started writing about my own illness and that her books have helped me find the humour in my story. In Furiously Happy, Jenny goes into detail about living with rheumatoid arthritis and mental illness. As the title suggests, it is a “funny book about horrible things,” and that line is so important to me. As someone with lupus I realize that life can be really hard sometimes but I should still be able to crack jokes about those hardships. It’s up to me how I react to everything that happens to me and I don’t want lupus to take that sense of humour away. Her first book guided me in realizing that my lupus story should be a funny story, and this book just solidified the importance of that for me. She shows us that it’s okay to be happy and miserable all at the same time. Life is great and life is crap, all at once. It is what it is and you should never have to apologize for it, but you also shouldn’t have to sacrifice who you truly are because life throws you a curveball.
10. IF AT BIRTH YOU DON’T SUCCEED BY ZACH ANNER
Over the years, I’ve learned that a sense of humor is the only skill that allows you to turn sucking at life into a career. Even the most embarrassing mishap can be spun into comedic gold. Or, more appropriately, every pile of dog shit you roll through can be used as a fertilizer for a great story at a party.
I’ve been a tad bit obsessed with Zach Anner since I started watching his Workout Wednesday videos on youtube a couple years back. He is a comedian with cerebral palsy who has had his own travel show on the OWN network, has a really cool show about learning different faiths called Have a Little Faith on Soul Pancake, and is a youtube star for such series as Workout Wednesday and Riding Shotgun. Zach is hilarious and does an amazing job of telling it like it is when it comes to living with a disability. His book chronicles his life from childhood, to the big turning moment when the internet rallied behind him so he could be on a reality show on the Oprah Winfrey Network, up until present day. He shares a lot of funny stories about filming his shows, road tripping with his friends, and the interesting predicaments you can find yourself in when you’re in a wheelchair. His book will make you laugh and it’s also very well written, so I highly recommend giving it a read. I will now leave you with a very funny video from his Workout Wednesday series:
Okay now it’s your turn! Tell me which books have helped you through your chronic illness – whether they are specifically about living with a disease or disability, of if it’s just a great book to help take your mind off things. Let me know in the comments!