Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

Barnes & Noble

IndieBound

Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.

The Pain Companion: A book review

No matter what chronic illness you battle, chances are your health condition brings you some type of pain throughout your patient journey. As a person with Crohn’s disease, pain can oftentimes be part of daily life…even when you’re in a “remission” state. It can be difficult and overwhelming to try and wrangle the beast that is chronic illness and chronic pain.

I recently came across a new book entitled, 9781608685707_FC“The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.” The author, Sarah Anne Shockley, lives with chronic pain herself and offers sage advice about how to find compassion within yourself and adjust your mindset. To Sarah, “pain is a necessity, but suffering is an option.” I’ve found personally after living with Crohn’s for more than 13 years, that the way I look at, deal with and handle pain has evolved greatly in that time. It’s not something that happens overnight, but you’ll notice a transformation within yourself as time goes by. You come to find a kind of patience and strength within yourself that you never knew existed.

Sarah recognizes how isolating pain is. She writes, “There is no one inside your world of pain with you; you are utterly alone there. Even others who are also suffering do not share the same pain.” SarahAnneShockley1_cThis excerpt really spoke to me, since no two IBD patients have the same exact journey or disease process or pattern. We’re all unique in how we experience the disease but can find great comfort from leaning on those who “get” the pain on a different level than the average person.

The book touches on the invincibility factor we all feel prior to diagnosis. How the healthy just expect to always feel well and take it for granted.

“When the body is not functioning properly, it brings up a huge amount of fear and anxiety. We can’t wake up in the morning and assume everything is going to be all right.”

The book discusses why pain has a purpose. How it warns us. The way it alerts us when things are awry. How we all can think of our pain as a “sign-post and a guide,” rather than a problem to be overcome.

As a parent myself, I loved an analogy that was shared about pain acting very much like a child pulling on a pant leg and whining. We can ignore the child all we want…but the more we tell the child to stop and be quiet, the more upset they get. After a while, we look down, take a breath, and try to calmly ask what they are trying to tell us, so we can act. _F6B3961The same goes for chronic pain. We all know with IBD that symptoms of a flare start to fester. We know it deep down and may try and keep the worry and stress to ourselves. Until the pain is too much to take on alone. Think of pain as your body communicating with you and giving you a target for healing.

“The Pain Companion” shares several helpful coping strategies and meditative exercises that you can put into play in the comfort of your home. From breathing practices to writing letters, it’s all about changing the relationship you have with your pain and coming to terms with it, rather than thinking of it as such an enemy.

Our stories, our patient journeys and our experiences open our eyes to the importance of slowing down, being present and simply being appreciative of the small things—like a day where you feel healthy and “normal.” This book reminded me and showed me that rather than an enemy, I can use my pain to my advantage—take the time to listen and thrive regardless of what it throws my way.

Click here to purchase “The Pain Companion off Amazon. Click here to learn more about Sarah and her blog and website.

 

“It’s hard being a sick girl in a modern world:” A review of “My Flare Lady”

Meet Kathleen Nicholls. She’s a 34-year-old from Scotland who’s battled arthritis since 2009 and Crohn’s disease since 2010. IMG_20170823_223410_970She’s not your typical patient advocate. She’s an author who uses her sense of humor to not only inspire, but also make you laugh. She says things many of us think, but won’t say. Her most recent piece of work, “My Flare Lady”, is a great compilation of advice ranging from dating with chronic illness to finding self-worth despite the hardships we face on a daily basis. Rather than having a “woe is me” attitude, she’s the complete opposite. She’s incredibly candid and her honesty is what makes her writing so intriguing.

Here are some of my favorite excerpts from the book:

“When you are told you will be ill for the remainder of your life that feeling hits you tenfold. You suddenly find you are singled out against your will. You’re the sick partner, the sick daughter, the sick Chandler of your friend group.”

“Spend time with people who buoy you. Those friends and family who make you feel good about yourself, and are generally able to maintain an optimistic outlook. Those people in your life, if you have them, who radiate positivity and don’t flood you with negative thoughts, are really a priceless balm for a stinging soul.”

“When you are sick and in love your relationship may have a chocolate box full of additional worries to factor in, but it doesn’t have to stop you and your beloved from having a joyful life together filled with hearts, flowers, and painkillers strong enough to flatten an Ox.”

“So when I take medication and I start to play-act all the symptoms it says in the booklet I’ll have against my will; it’s disappointing to say the least. I read the little pamphlet that comes with my medication mostly for a giggle. I like reading aloud the various symptoms I may well encounter; mentally crossing them off and inevitably getting round to “death” in the small print. It’s funny (albeit in a fairly dark way I grant you). But a dark sense of humor tends to fit well with a chronic illness.”

“No sign of active ‘disease’ or current symptoms may encourage a medical professional to gleefully cry ‘remission’ but many patients still experience many ongoing differing symptoms regardless, meaning they certainly don’t feel the benefit of said remission.”

“The idea that even genuine moments of joy can be tainted by the anxiety of what’s to come is disheartening to stay the least. It’s something most people don’t have to consider.”

“It’s hard being a sick girl in a modern world. Therefore, it’s of incredible importance that as women we value one another, educate each other and help one another up instead of knocking each other down. Unlike Chumbawumba we can’t always get back up again so easily.”

“When I get nervous in the hospital I remind myself I’ve been through worse, that I survived it, all of it, an that I am here for good reason. It doesn’t always make me feel joy upon joy when I’m being prodded and probed by relative strangers, but it reminds me to get my priorities in order.”

IMG_20171024_173739_449That gives you an idea of what an incredible resource this book is for women in the chronic illness community. Kathleen’s ability to share her experiences and speak to others to make a difference, inspires me to be strong in my patient journey. Though we’ve never met in person, we’ve been “friends” on Twitter, Facebook and Instagram for years. I had the chance to interview her about her latest book. Here’s what she had to say:

What inspired you to write “My Flare Lady”?

“Suffering from chronic illness can be incredibly isolating and it can be easy to get caught up in your own anxious brain, I always aim to write in a tone which feels inclusive and open, I want fellow sufferers to feel they are not alone and our shared experiences can be overcome and maybe even laughed at. I love and cherish women and in living with poor health for most of my life, I’ve always felt a kinship with women in the same rickety boat as my own. I want to inhabit a world where we pull one another up and where women (and men) can feel comfortable in being open and vulnerable with one another on their fears and experiences. It’s so important to know we are understood. “

What do you hope people take away from your book?

I hope readers can take a feeling of camaraderie, a feeling that we are in this together and that there is absolutely no shame in talking openly and honestly.

What type of response have you received from the chronic illness community?

“So far so good! The opinion of the chronic illness is so important to me, so I take away as much positive and negative feedback as I can on board. 20171129_201703People seem to enjoy the humour spattered throughout and find it to be informative and inclusive which is what I’d hoped for! This time round has been nerve wracking again so i try to only dip in and out of reading reviews for the sake of my own sanity/ego!”

Plans for future books in the works?

Yes, always! I’ve been working on a project based around the parallels between mental health and chronic illness and I hope to find more time to devote to that in 2018. I’ve also been playing around with ideas for short stories and longer-form fiction, but inevitably whatever I write always comes back to my diseased body!”

You can purchase “My Flare Lady” on Amazon. Click here to buy it, makes for a great Christmas gift—or a present for yourself. IMG_1002Kathleen is dedicated to helping others feel less alone and afraid in their fight with chronic illness. As someone who’s battled Crohn’s more than 12 years, I can tell you firsthand her words empower me to be strong. I constantly find myself nodding along while I’m reading and even laughing out loud. You can follow Kathleen on Twitter and Instagram @kathfantastic.