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

  You may want to believe that you have a temporary condition. Or, you may expect to find a cure. While that may be true, it doesn’t change the fact that until that day comes, you must find new ways to cope. Choosing to respond to each new crisis in your daily life in a comfortable and effective way doesn’t mean you’ve given up on finding solutions to the overall problem, it simply means you’re smart enough to want to suffer less. Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.

  This book provides multiple tools to help you to lead a broader, more functional life. It’s important to remember that chronic diseases are just as described: chronic. They will come and go, but inevitably, you will relapse. Acceptance isn’t about making you weak from the battle of fighting your disease; it’s about building a smart and capable foundation from which a relapse can’t knock you down.

  It’s usually best to start with getting to know your disease intimately. The more information you have about your disease, the better equipped you’ll be to handle the next move. This kind of information leads to empowerment, and that’s what makes you a stronger, smarter patient. Where you once may have felt weak and powerless to your disease, your willingness to accept it and to learn its pattern, and your commitment to prepare for it, will bring you peace. Accept the challenges you are up against and welcome the opportunity to absolutely kick ass.

  Is a Diagnosis Everything You Need?

  I’ve been living with a chronic illness since birth and throughout my journey, I’ve found myself twisted by embarrassment about my disease and shamed about being unable to lead a normal life. I’ve lost friends, been alienated by family, struggled to build a career, been blown off by doctors, and been thrown completely off course by misdiagnoses.

  I thought maybe all my confusion and exhaustion would be cleared away after I was finally diagnosed with a rare disease called primary immune deficiency in 2009 after nineteen years of waiting for answers. When I was also diagnosed with dysautonomia (the dysfunction of the autonomic nervous system), it became clear that while a diagnosis gives you a definite lead in finding the right treatments, the right words don’t always cure you. But, having a diagnosis did make some powerfully positive impacts in my day-to-day life.

  Validation and Proof

  If you can find them, firm answers are good for your mental and physical health. Many chronic illnesses mimic each other. Finding out the exact illness you have puts you on a clearer path of treatment and can help you to find a more specific support group. This was a bittersweet moment for me. I had just been diagnosed with this crap disease, but at the same time no one could tell me I was faking my disease anymore or blame my condition on me or my family. There was irrefutable proof that I had a disease—invisible as it was. It was a real thing and the shame of being called a hypochondriac popped like a bubble.

  Research, Prevention, and Support

  When you’re diagnosed, you can do research on your disease and see specialists with more education about your disease. If you’re diagnosed early, you may even be able to take preventative measures to eliminate common future problems for people with your disease. You also have access to drugs that are specifically for your disease, you can join disease-specific support groups, and you can connect with disease-specific organizations and online forums.

  After my first diagnosis, I had mildly successful rounds of treatment, but I was by no means cured. Also, having been undiagnosed for so long had created a dangerous issue with antibiotics; they were no longer strong enough to shake some of my infections. My doctors were perplexed about how to handle my treatment and suddenly I found myself back in the game of being a hot potato, thrown from one specialist to another. Wasn’t the diagnosis supposed to be everything? Wasn’t the chance to go online and learn about what was happening to my body the ultimate goal? The truth is yes and no. For every benefit that I spelled out earlier, there are some drawbacks.

  False Hope

  Once you receive a diagnosis, you may find yourself believing that your disease will now be immediately cured or go into remission. This isn’t always the case and keeping reasonable expectations is something you’ll have to manage. If you receive a misdiagnosis of a more common disease, you may end up not getting the right treatment plan for you. And if the treatment plan fails, you could end up feeling more hopeless than ever.

  Misdiagnosis

  Unfortunately, it’s also possible you could receive a misdiagnosis. In a Rare Disease Impact Report published by Shire Pharmaceutical (April 2013), the authors stated that, “according to patient/caregiver respondents, in order to get a proper diagnosis, a patient typically visits up to eight physicians, four primary care doctors, and four specialists, and receives two to three misdiagnoses before they are correctly diagnosed with a rare disease.” A misdiagnosis can send a patient veering off into a series of unfortunate directions; wrong medications, dangerous unnecessary therapies, and personal turmoil are just a few of the potential outcomes. For example, they may be misdiagnosed with a mental illness and spend years trying to cure something autoimmune with verbal therapy. Or, they may be given an inaccurate diagnosis of a common disease, when in fact, their disease is rare.

  I went through my first two rounds of treatment waiting for the moment that the drugs would kick in and I would instantly feel better. I was hoping to wake up with a different body and a different life. But that doesn’t always happen. Years after I was diagnosed with primary immune deficiency disease and the full circle of my poor health became clear, I no longer held the false hope that a label necessarily meant a cure. In fact, I was now having to treat each pesky symptom one by one.

  Feelings After a Diagnosis

  You may think that a wave of sweet relief will overcome you after the moment you get diagnosed with something, even if it’s only part of a puzzle piece. For me, the force that propelled me out of my bed the morning after my first treatment for my new diagnosis wasn’t one of overwhelming gratitude. I was bone-deep in resentment and outrage about all those years of doctor’s visits, the hospital stays, the invasive tests, and the time wasted. I was angry about how much time I spent wondering whether I was crazy or not. I was surrounded by people who told me I was an idiot! And, I felt like an idiot until most my puzzle came together and I began to find the right doctors, do the right tests, and had a handful of names for the things that had plagued me all my life. Even after the words were there, so many of the answers and treatments weren’t.

  I wanted my diagnosis to be my cure. I expected my body to change after it came to light. It had been this way for so many of my other friends. A diagnosis had meant a weekly steroidal shot or some kind of treatment and then they continued on with their lives as if they had never been interrupted. Was my situation really so rare? How come I hadn’t found the pot of gold at the end of the rainbow?

  It’s Not as Rare as You Think

  A few years after my first diagnosis, I began working for Global Genes, an international rare and genetic disease non-profit. Serving as their managing editor brought me closer than most to the heart of what rare disease patients have to endure before they finally get their answers. Reviewing their stories, I found a few common themes:

  Family and friends felt that the disease “wasn’t real” and that hospital visits were often unnecessary.

  Doctors regularly fobbed off concerns and requests for more tests and medications that were very new to the market.

  There was a real yearning for community support and communication both on and offline.

  Patients wanted to connect with other people who had gone through their same journey.

  As I edited, I realized that their stories were my story. My story was far from rare, and more likely than not, your disease is more common than you think. Chronic illness is everywhere, and the first thing to remember is that you are not alone.

  Make no mistake, the hu
nt for your diagnosis can be a life-long one. If you’ve had active symptoms since birth, but have yet to be diagnosed with any recognizable disease, you may be one of the 350 million patients globally who have a rare disease. Whether you’ve been diagnosed with a classified disease, accepting the notion that you have a chronic illness is truly the first step in learning how to cope with your symptoms and the roadblocks they’ve erected in your life.

  You Don’t Need a Clear Diagnosis to Connect to a Community of Support

  Many patients who have contacted me from my own blog have said they found comfort in my advice, but that they knew they had a long road ahead before they would be diagnosed. There was a sense of desperation in the tone of these emails. They didn’t have a name for the symptoms that plagued them; all they had was suspicion and judgment from their families and friends and painful, boring, or humiliating tests from their doctors.

  What I wanted to get across to them was that they didn’t need to wait for their results to connect to their community of support. It’s those who are in the murkiest part of their pre-diagnosis that often need the most support. Growing up without a community of support, I often went through crises alone. I could only compare my life with chronic illness to the healthy people around me, and that made me feel completely inadequate in every way. Had I known others going through similar trials, I would have realized that my experiences were common and in many cases temporary. I felt that because I couldn’t classify my disease, I had no right to support.

  No matter what stage of your disease, you are always entitled to support. Don’t let the small details stop you from understanding and benefiting from the experiences of other patients who have been where you once were with an undiagnosed chronic illness.

  Acceptance is Choosing to Move Forward

  At what point in your life did you know that your body was different? That maybe it wasn’t going to work as well as everyone else’s? That it was going to require you to work harder, be more aware, and experience more pain and discomfort than those around you? Can you acknowledge that at some point, despite knowing all of that, you still chose to stay in this body despite its problems?

  Can you take a minute to applaud how brave that is? You are among the few in this world who consciously know that they’ve got it harder but soldier on anyway. Can you take a moment to let go of the judgments of yourself and others, especially those times where you may have thought of yourself as weak or inept? Can you accept the idea that you are strong enough to live this life, whatever it throws at you? That you choose to live despite this handicap? That you know it won’t be easy, but you’re determined to be in the game anyways?

  Believe it or not, you are that person. You haven’t given up. You may have made choices in the past that didn’t pan out as you wanted. You may have had moments where you’ve felt like “giving up” in whatever capacity that was for you, like taking painkillers to avoid pain or showing fear when facing a surgery or test. But you’re still here in this body because you choose to be in it every second of your day. On some level, you’ve already made peace with the chaos.

  What Does Acceptance Really Mean?

  Do you ever feel like you’re constantly knotted up with the idea that you must hide your symptoms? Or, you can’t let your symptoms interfere with your work, school, or relationships? Are you unable to explain, accept, or even fully believe that your body can’t always be as functional as your friends or co-workers? Do you ever get that feeling of unbearable shame when you cancel a night out or call in sick to work? Do you ever see other people at the gym doing more intense exercise routines, watch co-workers stay late, or look over your shoulder at all your friends still sitting at the bar while you head out on your way home? Do you think, “why can’t I be like them?”

  You may feel like accepting your disease means that you’re giving up being a better, healthier person. In your mind, you might be telling yourself: If I let go, and accept that I have this disease, I’m going to become an invalid. I’m going to inconvenience everyone in my life. I’m going to lose my job and my relationship, and my children won’t get the attention they need and my life will be over.

  What if, instead of that conversation, this is the one you start having with yourself: I have a disease. I have a disadvantage here and if I give myself the right emotional nourishment, internal and external support, information and education, time, patience, and acceptance, I can not only cope with my disease, I can be a functional person. I can be happy because I’ll know that with everything I accomplish, not only did I carry it out under conditions that other people never had to overcome, but I achieved it without self-pity or contempt. I do have this disease and every day it’s making me stronger.

  Start considering the idea of accepting your disease. Take a moment, and give yourself a break from the shame you’ve felt, the name-calling, and the frustration. You didn’t ask for this illness, but you chose to live anyway. You may find yourself to be many things in this life, but at your core, you are a survivor.

  The Long Haul

  Whether your disease turns out to be a rare or common one, you’ll have to be prepared for a long haul. Treatment isn’t always just a surgery or a pill. It is often continuous life-long treatment, medication, or therapies. It can mean making vast changes in your lifestyle, reaffirming your life goals, and most importantly, taking on the responsibility of being a well-informed patient.

  Even though you may be looking for the right words to define your illness, your story will be a lot bigger than what is revealed in a single blood test or even the entire unraveling of your genome. I wish I’d known that being diagnosed wasn’t the answer to it all. It was the start of the question, “How do I live now?”

  Whether you’re in your hospital bed, your office, at the park with your kids, or in the doctor’s waiting room, the present moment is the time to start cultivating the attitude, perseverance, and knowledge of a prepared patient that accepts their circumstances. It’s time to stare down the face of your disease and say: I know you, I hear you, and you can scream all you want, but I’ve still got a life to live.

  Chapter 2

  Self-Compassion and Rising Above Self-Defeating Thoughts

  Self-bullying is an unfortunate habit for those who are constantly trying to psyche themselves up to deal with pain and other symptoms of their illness. You might have self-defeating thoughts, such as:

  Don’t be a wuss, it’s just a headache.

  If everyone else has the flu and can still make it till clock-out, my pathetic ass should too.

  I will not be the loser who cancels on her friends for the second night in a row.

  How we motivate ourselves changes the way we think about our character. If you judge yourself as weak or incompetent for having a flare up, you make it impossible to cultivate the self-esteem that you need to deal with the reality that your disease will flare up. There are so many challenges to chronic illness. It will undoubtedly bring you through both physical and mental changes: Weight changes, surgical scars, and other physical reminders of the disease will threaten your self-image and how others see you. But, it all starts with how you see yourself.

  At fourteen, I’d gone from a size double zero to a seven in the span of two months due to a new medication I was taking. One day, as I was staring at my rear end in an end-of-the-aisle mirror at Marshall’s, I said out loud, “My ass is a continent.” “It could be worse. It could be a planet,” my mother said without sympathy, filing through a rack of dresses. I had already felt like a failure having to go on antidepressants to combat stomach pain that left me feeling like I was constantly trying to digest a sandwich full of shards of glass. Like most women with an illness, my weight was subject to whatever food my body could handle that day. Usually that meant toast and broth, but sometimes it was a slice of cake. It would also vary depending on the amount of exercise I could undertake at any given stage of illness. Sometimes I’d work out three times a week and sometimes I could only work out once
every six months. There were times that even walking from the bed to the bathroom was difficult. I was also constantly under the influence of the side effects of my medications. Steroids, a common treatment for those with autoimmune and immune deficiency diseases, usually resulted in what is petulantly referred to as “moon face” due to weight gain in the face.

  Over the next ten years, my disease made it hard to eat nutritious meals or even wear a weather-appropriate wardrobe. I think the true test of my self-compassion was deciding to keep my Florida wardrobe (tank-tops instead of turtlenecks) after doctors cut a slit above my breast for a PORT-A-CATH®, placed there for my daily infusions. This meant that I had a huge, sticky bandage smack-dab in the middle of my upper chest. It was visible through all my shirts and without adopting a nun’s wardrobe, there really wasn’t an easy way to hide it. My body weight fluctuated so much that there was always the possibility that the jeans that fit on Tuesday would not fit again on Friday. As I had begun to accept my body’s ever-changing shape, the panic that came with gaining weight eventually subsided. I did what I could, when I could, and I had to accept that some days there just wasn’t the possibility of me going for a run or being able to eat a salad. Along the way, I developed my own set of tools, like exercises I could do from bed and meals I could make by triple-pureeing them in the blender.