Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Read online

  “Just as in her blog, Ilana Jacqueline continues to educate chronically ill patients with a sharp wit, insightful information, and, most of all, hope. I would buy this for anyone going through life’s journey with the extra burden of ill health to give them effective tools and stories that will support them, and of course, a few good belly laughs.”

  —Carri Levy, creator of the Behind the Mystery series for Lifetime TV

  “An intimate, humorous, and defiantly real guide to living with chronic illness. Jacqueline ushers the reader with intimate and humorous examples drawn from her everyday life—from passing out in parking lots, to the practicalities of dating and managing relationships, to the pain and frustration of relapse and pill diets while reminding the reader at every turn: Never let your illness define you. An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.”

  —Alexa Tsoulis-Reay, senior writer, New York magazine

  Publisher’s Note

  This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in rendering psychological, financial, legal, or other professional services. If expert assistance or counseling is needed, the services of a competent professional should be sought.

  Distributed in Canada by Raincoast Books

  Copyright © 2018 by Ilana Jacqueline

  New Harbinger Publications, Inc.

  5674 Shattuck Avenue

  Oakland, CA 94609

  www.newharbinger.com

  Cover design by Amy Shoup

  Acquired by Melissa Kirk

  Edited by Erin Raber

  All Rights Reserved

  Library of Congress Cataloging-in-Publication Data on file

  Contents

  Introduction 1

  1. Accepting Your Life with Chronic Illness 11

  2. Self-Compassion and Rising Above Self-Defeating Thoughts 21

  3. What They’re Going to Say About You 35

  4. Making New Friendships and Salvaging Old Ones 55

  5. Dating and Relationships 69

  6. Creating a Support System 83

  7. The World Won’t Wait: School and Work 97

  8. Remaining Independent 123

  9. Becoming Your Own Patient Advocate 135

  10. Thriving with Chronic Illness 159

  Acknowledgments 167

  Appendix: Online Resources 169

  References 195

  Introduction

  Chronic illness is kind of an asshole. It doesn’t care if you have things to do. It doesn’t care if you can’t walk down the aisle on your wedding day. It doesn’t care if you have to struggle to sit through your graduation ceremony. It doesn’t care if you sleep well, eat well, or if you take your medicine on time. It doesn’t care if you’ve got a big meeting in the morning, or a special dinner later tonight.

  When you’re trying to figure out how to live with chronic illness, sometimes you’re going to feel like an asshole too. Like when you miss your best friend’s birthday party because of it. Or when you hem and haw about buying plane tickets to New York because you just don’t know how you’ll feel on those days. Or when your dogs or your kids want to play and you just can’t.

  Sometimes it serves a purpose. Like knowing all the best pick-up spots for chicken soup. Or always having a spare painkiller/anti-histamine/lozenge/sleeping pill in your purse for the friend in need. Or just being the one who constantly makes the whole group take bathroom breaks when one of them has just drunk a 42 oz Gatorade and doesn’t want to be rude. However limiting, binding, time-and-energy thieving chronic illness might be, life with it is all about making choices that you control.

  Take responsibility for it. Recognize that whatever you do right now is going to affect you later. Know that not speaking up and going to the doctor when symptoms strike usually means that they’re going to get worse, not better. And, realize that not sucking it up and dealing with it on certain occasions can mean the difference between the people around you respecting you or alienating you.

  You should concede that you are one hundred percent responsible for the planning of your future from here on out. Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future. It’s knowing that there is nothing wrong with wanting when there is still the hope of having. As you move forward into a functional life, what will be your way of making money, meeting career goals, and managing your marriage, family, and friends, and most importantly, your expectations?

  Me and My Invisible Chronic Illness

  Many chronic illnesses are obvious to the naked eye. Assistive devices, such as walkers, wheelchairs, tubes, monitors, oxygen tanks, and other medical devices can be an obvious signal that the person has a disease. However, there are also many chronic illnesses that are “invisible.” An invisible illness means that a person can be continuously sick, but may look just fine on the outside.

  Most days I get up in the morning and comb my hair. I pick out whatever best fits the description of something that could be both worn walking on the runway and survived unwrinkled while taking a nap. I slide on a little eyeliner. I zip up my boots, throw back about seven or eight pills, and proceed to my parking spot. I get in my average car, wiggle my handicap sign out from underneath the visor, and drop my gear into drive. It takes me a quick fifteen minutes in traffic to get to the hospital. I reach blindly around my seat for the laminated parking pass that reads INFUSION CENTER PATIENT PARKING and throw it on my dashboard.

  I walk past the old, the sick, and the heavily pregnant. I see patients whose balding heads tell me that chemo has ravaged them. I slide into a recliner next to a very old man getting dialysis. I see the questions boiling up behind his eyes: Am I a volunteer? A caretaker? Didn’t I know that these seats where reserved for patients? “What’s a girl like you doing in a place like this?” he asks in a way that sounds more like an accusation than a question.

  Having two invisible diseases—primary immune deficiency disease and dysautonomia—makes me a prime target for suspicion. For most of my life, I dealt with doubtful teachers, coworkers, family, and doctors who challenged the idea that my condition was severe enough to inhibit parts of my daily life.

  But, boy did it! I had infections that lasted months, digestive issues, migraines, neuropathic pain, tachycardia, chronic fatigue, and hypersomnia. (And, that is just a few of the possible daily roadblocks.) For years, I felt stuck between two worlds. I tried to keep myself looking calm and collected when I was feeling ill enough to be in the hospital. I remember sitting through business meetings with stomach cramps so bad that I soaked the back of my shirt entirely with sweat. I had already excused myself to go to the bathroom three times and my clients were getting frustrated. By the time I could get back in my car to drive home, my mind was a total blank. I’d retained nothing from the meeting because of the distraction of the pain, which added a second level of humiliation on top of my jittery appearance.

  There seems to be an unwritten rule: As a professional, anyone can have a sick day from time to time, but you can’t have 365 sick days in a row. And, you can’t expect every client to have patience and no prejudice in the face of invisible illness.

  I’m not covered in rashes or sporting a cast. My illness takes about as much shape as an empire waist dress. My illness doesn’t require a
wheelchair full-time, but that doesn’t make it any less present, constant, or by my side screaming like a toddler on meth that no one else can see. Here are just a few examples of scenarios that I experience in my daily life.

  Judgment Over Using Handicap Parking Placards: I couldn’t even stand in the line at the DMV long enough to get my paperwork done to get the placard. I had to grab a chair and keep scraping it across the floor. So as far as parking in between those blue and white lines? I’m not parking there because I’m lazy. I’m parking there because if I don’t, my system is going to short wire and I’m going to find myself in a situation where I end up passed out near the sidewalk with my skirt up over my head.

  Cancelled Parties, Appointments, and Dates: I don’t cancel plans because I’m scatterbrained or reschedule my appointments because they aren’t a priority. Issues with my health, like the state of my bowels, for instance, end up being the priority.

  Financial Delusions of Grandeur: I don’t blink at that twenty-five-dollar co-pay because I can afford it three times a week. It’s just going on the never-ending tab of medical debt.

  I have been through the valley of the shadow of debt. I have paced the hospital hallways looking for a diagnosis, a nurse, or maybe just a teaspoon full of that dignity that got spilled somewhere down that long line of colonoscopies. I have walked out of far too many doctor’s offices, fuming, frustrated, and fogging up my car windows as I tried to settle my rattled body and mind around the concept that they say I might never have a diagnosis or a treatment, and in turn, a normal life. When you’re sick, the search for that better life never really stops. No one can ever truly “settle” in their search for a healthier, more functional life. Accepting that life with chronic illness is going to be different than what you may have thought your life would be is a huge hurtle, but it doesn’t mean you should stop constructing new ways to bring yourself a more satisfying quality of life.

  The Blog

  It has been hard for people in my life to grasp why I couldn’t just “let go” of finding a diagnosis. They struggled to understand why I couldn’t just take a pill or shot and be “cured”! I started my blog (www.letsfeelbetter.com) to help those people in my life get the full story, if they were interested in hearing it. Not everyone in my family wanted to listen to what they felt like were excuses as to why my life was littered with doctor appointments and hospitalizations. I was angry and heartbroken by the lack of support from my family. How family reacts to your disease is something we’ll cover later in this book. It’s a big issue and one that hits hard for many.

  To my surprise, as I began to post my stories, people elected to read them! Although some members of my family opted to not read my blog, there was an outpouring of unexpected support from friends, neighbors, old teachers, and strangers. I received many personal emails from readers who were also going through the same issues I was experiencing. Readers checked in as I catalogued my daily life trying out new medications and treatments and hitting my highs and lows of health.

  I wrote my horror stories, like the time I had a kidney infection and almost fainted in a discount grocery store because I was so determined to find kosher pie dough that I refused to leave. I wrote about being stuck in the hospital for nine days and having to drink the colonoscopy prep solution every single night because my stomach was so paralyzed we couldn’t get it to work.

  I wrote about my personal growth too. I talked about signing up for cardiac rehab not long after my diagnosis and going from barely being able to sit up straight without blacking out to walking on the treadmill for an hour. I tracked how the changes in my lifestyle were starting to make an impact on my symptoms.

  I also shared the pain of every single relapse. Rereading those posts about my worst moments and how I got back on my feet again took away so much of my fear. When I was having a low point, these posts reminded me that I would get back up again. It’s my hope that this book will encourage you to also look back on your worst moments with humor, and to look forward to your next relapse with strength.

  How this Book Can Help You

  This book will provide clarity in the chaos of chronic illness. Each chapter will assist you through different social, emotional, financial, and psychological issues associated with your disease. Here’s what this book can help you to understand:

  Even before you can name your illness, it affects your life. The way we deal with symptoms before we have a name for them can greatly impact our self-esteem later on down the road. Maybe you thought you were weak or especially inept at handling life’s ups and downs. Understanding that you must acknowledge and accept what you can and can’t push yourself to do will help to reconfigure the image you have of yourself.

  Know that there is a way to live with chronic illness. Life doesn’t end after you become sick. Even if you’ve been knocked down by a bad flare, you will eventually get back up again and be able to learn new ways to cope with work, family, relationships, and stress.

  Throughout it all, it seems like everybody has an opinion. The disease may be yours and yours alone, but the people in your life will have their own thoughts and judgments about how you handle the impact of chronic illness on everything from your daily routine and medication choices to major life decisions. You’ll have to decide whose opinion is worth listening to, and whose you should be blocking out.

  Your disease does not disqualify you from love, career advancements, or a positive self-image. Once you begin to balance your perception of yourself with the reality of your disease, you’ll be able to start making plans for your future. There are tools you can integrate into your life to help you alter your energy level, diminish the limitations of your disabilities, and increase your day-to-day stamina.

  We’ll be discussing your treatment plan throughout the book and you’ll be asked to remember that your treatment is your choice. Chronic illness generally means a lifetime of complex medical decisions. From assistive devices to black box medication, you will find yourself at multiple forks in the road. You’ll need to know your own priorities and strengthen your resolve so you can make educated choices with confidence.

  This book is not going to convert you to a new religion. It won’t tell you which vitamins to take or what yoga positions to pretzel yourself into. You won’t be force-fed a new dietary regimen or be prescribed a medication. It won’t belittle your small triumphs or shame your momentary failures. This book is a reference for living, even when the world feels smaller every day. It is my hope that it will help you to understand that you are not alone in this battle, and that you are deserving of compassion, love, confidence, and true quality of life.

  Find Answers to Your Questions

  If the people in your social and emotional sphere of influence have proven to be unsupportive, or if you’re still struggling with how to best describe what’s happening to your body, you probably have a lot of questions you’re itching to have answered. This book will help to answer the following and much more:

  How do you respond to people who call you a hypochondriac?

  How can you resolve the guilt from feeling like a burden in your marriage, relationship, or family?

  How do you explain your disease quickly without confusing or annoying people?

  How do you know which doctors and medications to trust?

  How are you supposed to get answers about what’s wrong with you if you have no energy to make the diagnostic odyssey?

  Is this just a phase or are we looking at a lifetime of chronic illness?

  How do you reach out for help?

  What does the world look like for someone with so much medical and emotional static?

  What is there to be done when your medical records could fill several binders, when you’ve been laughed out of doctor’s offices, and when you feel as though no treatment will ever ease the realities of your disease?

  How can you push through when the medical debt builds up and the medications begin to create new symptoms you didn’t see coming?
/>
  How can you start the process of organizing the ridiculous mess that has become life with chronic illness? Who can you trust to guide you?

  Are You Ready to Get on With Your Life?

  For many years, other patients have contacted me through my blog, who are totally consumed by their symptoms and unwilling to believe that happiness is out there for someone who can no longer support themselves physically, socially, and economically. They don’t believe that there is anyone who can help them. But, there is: There is always one person left to fight for your best life—you!

  Being a patient with ongoing needs, multiple medications, frequent hospital visits, and the responsibility of making life-altering choices about your own future health requires strength, smarts, persistence, and creativity. You’ll need to be on top of everything all the time, even when you’re under the weather. You’ll need to be creative even when there seems only to be one path. You’ll need to be strong even when you’re past your breaking point. You’ll need to learn how to command help, even when you’re alone.

  Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart. And that’s exactly what this book will help you do.

  Chapter 1

  Accepting Your Life with Chronic Illness

  Accepting that you even have a condition that could be termed a “chronic” illness is a hard first step to take. For me, it took nineteen years of bad colds and frequent hospital visits to realize that maybe this wasn’t a normal situation. Patients may feel reluctant to even consider the idea that they have a chronic illness because they feel it puts them in a category that they don’t want to be associated with. It’s a long and lonely road to realizing you might need help, but there’s certainly no way to outsmart something if you can’t even introduce yourself to it.