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

by Ilana Jacqueline

  Focus on Your Quality of Life, Not Your Diagnosis

  When a disease is hard to diagnose, we can spend years trying to find the answer to questions like: “Is it because of a parasite? Bacteria? A cancer?” There is an infinite list of possibilities as to why you could be sick. But after a while, you’ve got to take a break from the endless hunt for answers and ask yourself, “How am I going to handle living with my disease today?”

  You don’t want your life to just be about going from doctor to doctor. You need balance—time to spend with friends and family and to do the things that really matter to you. You can’t hunt, search, question, or get an answer for any of the whys in life until you’ve mastered feeding yourself, moving yourself, and balancing your work, relationships, and symptoms at the same time. If you don’t take the time to do those things, you aren’t really living. Whether you’ve been diagnosed, are in treatment, or are still struggling to put a name to the disease that is haunting you, you need to find acceptance. It’s not defeat. It’s not giving up. It’s learning how to continue growing, striving, and thriving even when chronic illness stands resolutely in your way. Maybe in the past you’ve felt like the victim, but now you have some tools to reclaim your life.

  Advocate for Yourself

  At the time when I was being told by many doctors that I was faking my illness, I couldn’t imagine a reality where I’d be able to stand up for myself. My disease is, in every respect, my responsibility. Fighting for a better quality of life is a constant. You need to wake up each morning and ask yourself, “How can my life be improved?”

  When you’re advocating for yourself, it means you’re empowering yourself through information and education. You’re doing your research and fulfilling your duty as the owner of your body to know—not to be told—what options you have. This information can be found through your knowledgeable physicians, but it can also be explored in books, online, through a disease-related organization, and most importantly, in discussion with other patients! This book has shown you multiple ways in which you can reach out to get the latest information to best benefit you throughout your treatment. Once you have your options, the next step is weighing them carefully. You’ll want to discuss them at length with your doctor, partner, friends, or family. If you’re too scared to ask your questions and demand the answers you deserve, you may find yourself disappointed by your doctor and their treatment plan.

  Misinformation and misunderstanding can result in shame, which is what leads patients to stop themselves from taking action, both medically and therapeutically. So, please don’t be scared to share the fruits of your research and the value of your personal experience with other patients through support groups and websites. Do your part by joining in on the conversation. Ultimately, how you choose to handle your disease will dictate how you experience your life. Only you can determine what will give you the greatest freedom. Only you can define what “truly living” with your chronic illness feels like to you.

  Stay One Step Ahead

  Remember when we talked about preparing for a tsunami instead of a rainy day? You should feel plenty prepared now! I can practically hear the squeak of your boots and the drops on your umbrella. Money? Made and saved. ER plans? The address is already plugged into your GPS. Fallen on the floor and panicked you won’t be able to get back up? Nope, because you’re one step ahead of whatever your disease is going to throw at you. If you are still unsure, go back to chapter 8 to review how to establish the groundwork for autonomy in your adult life.

  Outsmart Your Disease and Don’t Forget to Plan for Your Happiness

  Managing chronic illness means developing strategies to assist you in moving forward with your life’s greater focus, and with as minimal suffering as possible. Don’t head-butt your disease, outsmart it. Outsmart it in your relationships by breaking down those silent barriers with the hard questions: “Is this too much for you?” “Do you resent me?” “Do you believe this is a real condition, with symptoms worthy of the extremes I’m using to treat them?” Outsmart it by making plans of action to create that greater net of support and to give your friends, family and partners the information they need to understand what you’re experiencing and how they can help. Outsmart it in your classroom, your workplace, your doctor’s office, and at the family dinner table. Outsmart it when you feel like you can’t find your way around the endless monstrosity of it. Outsmart it because you feel and you know that you deserve all the privileges and opportunities that others have.

  In this book, you’ve learned how to evaluate your living situation to see if you are ready to go out on your own, and how you can make the process safe and comfortable. You’ve also learned how to address your needs at school or work and maximize your flexibility when other people are needing things from you. With these safeguards in place, there is plenty of room to be the person your illness may have prevented you from becoming. With all the planning we’ve discussed so far, the one thing you don’t want to forget is to plan for is your happiness. Yes, you will have to make adjustments to create a functioning life, but it can and should also be ultimately fulfilling.

  Continue to Learn and Practice Coping Mechanisms

  The world is not going to stop setting you up to fail, sometimes in spectacular fashion. No matter how smart you plan, or how savvy your psychic abilities are, life will throw stuff at you that you didn’t see coming. Beyond accepting it, the key to thriving is the way in which you treat yourself and give yourself compassion. In Dawn’s words, “Love can heal your pain—the love you actively express towards yourself. The mind and body are intrinsically linked. Love and kindness in your thoughts will improve the health of your body.”

  There are portions of this book dedicated to establishing a support network, but the truth is, you must be your greatest cheerleader. You must be in charge of going easy on yourself, quieting that inner critic, and loving you for everything that you are. It is easier said than done, but the more we take the time to monitor how we think about ourselves, take time for the comforts we enjoy, and pat ourselves on the back for the superhuman amount of resilience we are capable of, the closer we get to total thriving.

  Accept Your Disease

  As I’ve mentioned many times in this book, the main trait a successful, functional patient has is the ability to accept—again and again—whatever comes. As you forge ahead, remember that acceptance has never been the road to giving up. It’s just a new perspective, one that you’ll find eliminates so much of your inner turmoil. While you may have looked around yourself before and seen a world full of people more capable or strong-willed than you, with acceptance, hopefully you can now see that you too can tap into a deep well of strength and willpower.

  Become Your Most Empowered Self

  Hopefully this book has opened a new world to you—one where the road ahead to changing your life is much clearer and accessible. If nothing else, I want you to understand that you’re more capable of thriving now than you ever have been before. In fact, many with chronic illnesses find that other obstacles in life become laughably trivial after they’ve started learning to cope with their disease. Deadlines? Bills? Social squabbles? Please. While others struggle with these issues, your perspective from simply trying to keep your head afloat allows you to see what is most important in life. It is a power very few possess. Now is the time to become your most empowered self.

  Remember who you are. You’ve had tubes in places there should never be tubes. You’ve had bandages ripped off the places you wouldn’t wax on your bravest of days. You’ve had a reasonable conversation with your health insurance provider.

  I’m not saying you’re a superhero or anything.

  But…

  like…

  you’re a superhero.

  Acknowledgments

  Thanks to the many patients who spoke out and shared their story. Thank you to Dawn Wiggins and Kait Scalisi for their invaluable advice. A huge thanks to my mother, husband, friends, family, and those wh
o have been a powerful network of support. And last, but not least, a big thanks to my editors at New Harbinger Publications, Ryan Buresh, Caleb Beckwith, Clancy Drake, and Erin Raber, and my agent Jill Marsal for helping to make this book a reality.

  Appendix: Online Resources

  General Resources

  The American Autoimmune Related Diseases Association

  http://www.aarda.org

  The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of the socioeconomic impact of autoimmunity. They accomplish this through facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical, and efficient manner.

  American Gastroenterology Association

  http://www.gastro.org

  Founded in 1897, the AGA has grown to include more than 16,000 members from around the globe who are involved in all aspects of the science, practice, and advancement of gastroenterology. The AGA, a 501(c6) organization, administers all membership and public policy activities, while the AGA Institute, a 501(c3) organization, runs the organization’s practice, research, and educational programs.

  American Thyroid Association

  http://www.thyroid.org

  The ATA is the leading organization devoted to thyroid biology and to the prevention and treatment of thyroid disease through excellence in research, clinical care, education, and public health.

  The Arthritis Foundation

  http://www.arthritis.org

  The Arthritis Foundation is the largest national nonprofit organization that supports more than a hundred types of arthritis and related conditions. The foundation offers information and tools to help people live a better life with arthritis, such as advice from medical experts, specialized arthritis self-management, or exercise classes. For every dollar donated to The Arthritis Foundation, seventy-eight cents goes directly to fund research and activities for people with arthritis.

  Celiac Disease Foundation

  http://celiac.org

  CDF has played a crucial role in improving the lives of those afflicted with celiac disease. They sponsored the first serology workshop (which led to today’s celiac disease blood test), advocated on Capitol Hill for gluten-free labeling laws, partnered with mainstream manufacturers to create today’s gluten-free marketplace, and offered the number one website for celiac disease. With a range of vital programs and services for the public, patients, healthcare professionals, and food industries, CDF meets the growing public health challenge of diagnosing and treating celiac disease and other gluten-related disorders.

  Chronic Connect

  http://www.chronicconnect.org

  Chronic Connect Incorporated seeks to serve the chronic illness community by providing resources and community for patients. It develops technology that allows patients to find local support, sending care packages to both patients and caregivers in need, and creating programs for patient and caregiver support and education.

  The Crohn’s and Colitis Foundation of America (CCFA)

  http://www.ccfa.org

  Founded in 1967, CCFA has remained at the forefront of research in Crohn’s disease and ulcerative colitis. Today, they fund cutting-edge studies at major medical institutions, nurture investigators at the early stages of their careers, and finance underdeveloped areas of research. In addition, their educational workshops and programs, along with their scientific journal, Inflammatory Bowel Diseases, enable medical professionals to keep up with this rapidly growing field.

  Dysautonomia International

  www.dysautonomiainternational.com

  This 501(c)(3) non-profit was founded in 2012 by patients, caregivers, physicians, and researchers dedicated to assisting people living with various forms of dysautonomia.

  Endometriosis Foundation of America

  http://www.endofound.org

  The Endometriosis Foundation of America strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Engaged in a robust campaign to inform both the medical community and the public, the EFA places emphasis on the critical importance of early diagnosis and effective intervention while simultaneously providing education to the next generation of medical professionals and their patients.

  Global Genes™

  www.globalgenes.org

  Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope—the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, is now more than 500 global organizations. Their mission is to eliminate the challenges of rare disease by building awareness and providing critical connections and resources to positively impact affected patients and families.

  G-PACT

  http://www.g-pact.org

  G-PACT provides assistance to patients and families affected by gastroparesis and intestinal pseudo-obstruction in order to improve quality of life and decrease fears surrounding the conditions. Their aim is to provide hope to those who have lost it, support to those who need it, and knowledge to those who do not understand this condition.

  IG Living Magazine

  http://www.igliving.com

  The IG Living magazine’s mission is to support the IG community through education, communication, and advocacy. IG Living is the only magazine dedicated to patients who use immune globulin products.

  Immune Deficiency Foundation

  http://primaryimmune.org

  Founded in 1980, the Immune Deficiency Foundation (IDF) is the national non-profit patient organization dedicated to improving the diagnosis, treatment, and quality of life for people with PI through advocacy, education, and research.

  International Foundation for Functional Gastrointestinal Disorders

  http://www.iffgd.org

  The International Foundation for Functional Gastrointestinal Disorders (IFFGD) is a nonprofit education and research organization. Their mission is to inform, assist, and support people affected by gastrointestinal disorders.

  Invisible Disabilities Association

  https://invisibledisabilities.org

  The Invisible Disabilities® Association is passionate about providing awareness that invisible illness, pain, and disabilities are very real. Their mission is to encourage, educate, and connect people and organizations touched by illness, pain, and disability around the globe.

  Let’s Feel Better

  https://www.letsfeelbetter.com

  Author Ilana Jacqueline’s award-winning blog offers hilarious and heartfelt experiences about coping with chronic illness. From full contact fights with skull-cramping migraines to making peace with being a human pincushion, she writes boldly and unabashedly about breaking down, getting back up, and pulling off the bandage that is “coming out” about the shame and frustration of living with chronic illness.

  Lupus Foundation of America

  http://www.lupus.org

  The Lupus Foundation of America is devoted to solving the mystery of lupus, while giving caring support to those who suffer from its brutal impact. Their mission is to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.

  The National Adrenal Diseases Foundation

  http://www.nadf.us

  The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families. Their mission includes stopping unnecessary death from undiagnosed Addison’s disease and to improve the quality of life for those living with it.

  The National Fibromyalgia Association

  http://www.fmaware.org

  The National Fibromyalgia Association is a non-profit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromya
lgia.

  National Foundation for Celiac Awareness

  http://www.celiaccentral.org

  Through empowerment, education, advocacy, and research, the National Foundation for Celiac Awareness (NFCA) drives the diagnoses of celiac disease and other gluten-related disorders and improves the quality of life for those on a life-long gluten-free diet. Their goal is to reduce the devastating impact of undiagnosed celiac disease, as well as the contraction of other diseases, such as cancer, diabetes, osteoporosis, and an “autoimmune cascade.”

  The National Multiple Sclerosis Society

  http://www.nationalmssociety.org

  The National MS Society mobilizes people and resources to drive research for a cure and to address the challenges of those affected by MS. Headquartered in New York City, this non-profit organization with chapters nationwide helps people affected by MS through funding research, driving change through advocacy, facilitating professional education, and providing programs and services.

  The National Organization for Rare Disease (NORD)

  https://www.rarediseases.org

  The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.