The Fall of 2013 marked a significant milestone in my life: the fourteen year anniversary of the day I first began experiencing symptoms of Chronic Fatigue Syndrome (CFS) and Fibromyalgia. Anniversaries come every year, but typically some will hold greater significance than others. Most years I don’t stop to reflect that, yes, it was around this time that I began to notice the constant pain, or the unrelenting fatigue; life is simply too busy for such incessant reflection, and I am usually preoccupied with the business of getting through another day. But 2013 was special, because it marked a particular threshold. I am twenty-seven years old. I began exhibiting signs of CFS and Fibromyalgia when I was thirteen years old. That means that, as of the Fall of 2013, I have now spent over half of my life living with these chronic illnesses. Surely this is something worth pausing to consider.
Reflecting on this reality brings with it a great deal of pain. I believe that memory shapes us, that the stories of who we are and where we come from matter to where we are going. The reality that, two or three decades from now, I may not be able to remember what it was like to be a twelve year old girl free from these illness, frightens me. I fear forgetting my past, because I fear forgetting the part of myself that is unmarked by these illnesses. So I did my best not to notice when the anniversary passed. I didn’t mention its significance to the people in my life, because I did not want to think about its significance.
I do not want to think about these things, but I find that am forced to, because since starting this blog I have come to realize that thinking about my illness, about how it has significantly shaped my life and identity, is a good thing. Sharing those reflections with others, I have found, can help them as they make sense of their own life story.
This is a fact that was brought home to me a few months ago when I received an email from a friend. Our friendship started as a result of this blog, and I now consider her a fellow traveler and encouragement in this crazy, daily experiment of living with chronic illness. In her email she was sharing with me how her health has been, about a new team of doctors she is working with and the new treatments they are attempting (these are the types of conversations that tend to anchor friendships among people who are chronically ill because, in many ways, these friendships are the only spaces where we feel complete freedom and a sense of kinship that allows us to be our most truthful selves) and about how she is handling the transition emotionally. Towards the end of her email, she offered this reflection:
You know how people say, “Whatever doesn’t kill you makes you stronger?” I’ve been reflecting on whether this experience has made me stronger? What have I learned? What am I learning? How have I grown? How am I better? I don’t know…
The truth is, sometimes I don’t know either. But I thought her questions worth reflecting on, so I tucked them away in the back of my mind. The blog post below is my attempt to honestly answer the questions she posed. I dedicate this list, 14 Lessons I’ve Learned After 14 Years of Living With Chronic Illness, to the friend who got me blogging again. I pray that it is a help to her as she marks the milestones in her own journey.
14 Lessons I’ve Learned After 14 Years of Living With Chronic Illness
Lesson 1: Don’t Accept “There’s Nothing You Can Do”
There is always, always, always something you can do to help alleviate your pain, cope with depression and stress, and lead a better life. Something that I didn’t realize as a young teenager thrust into the frightening world of illness was that when a doctor tells you, “There’s nothing we can do,” it often means, “We are not able to cure you.” Doctors often focus on the cure and, when cures are impossible, they often tend to give up. But the absence of a miracle drug or a certain recovery is not a sign that you should also roll over and accept the way things are. It is a sign that you must work harder to recognize the ways your chronic illness is affecting your life, and strategize how best to manage your symptoms to be able to lead a life that you can call meaningful and joy-filled.
Lesson 2: Every Little Thing I Do, Helps – The Worst Thing I Can Do is Nothing
This lesson followed closely on the heels of the first. Once I realized that there were, in fact, many things I could do, I was a little overwhelmed. Should I start with developing a regular, and safe, exercise routine? How about changing my diet to incorporate more healthy foods? Keeping a journal to track my depression? Going to therapy? Finding a hobby? Spending time with friends that doesn’t revolve around talking about my illness? I have found that doing any one of these things consistently, or even any combination of them sporadically, significantly improves my quality of life. I sleep better, have less pain, and am more equipped to manage the emotional low points when I am doing the little things, every day, that add up to a world of difference. There is only one thing that consistently causes me more pain and more depression, and that is lying in bed, telling myself that I will never feel any better than I do at my worst moment.
Lesson 3: Learn to Fight Back Against Your Negative Thinking
It took me quite a few years to recognize the link between my chronic illness and my depression. This is not to say that my illnesses are simply the product of a depressed and anxious mind (as some of my earliest doctors tried to suggest). My Fibromyalgia is very much the product of a central nervous system that has been rewired through years of chronic pain; and while the cause of CFS is as yet unclear, it is not the product of hypochondria. Having said all that, having a chronic illness can be incredibly depressing. I already struggled with depression and anxiety as a preteen – stemming from an unhappy and troubled home life – but that depression became amplified as a result of my diagnoses. It took years of interacting with counselors whom I deeply trusted in order to name the underlying negative thoughts that were actually keeping me from effectively managing my illnesses. Through a process called Cognitive Behavioral Therapy, I began to learn how to identify unhelpful negative thoughts (for example, the thought, “I will never feel any better than I do at this moment,” invariably came up during some of my worst flare ups) and start countering them (“Really, Amanda? Remember just a week ago when you were in pain, but could actually get out of bed? And that was after a similar flare up. But you did eventually get out of bed. You will get out of bed again.”). With chronic illness a huge part of the battle is not against the symptoms you are experiencing, but against the stories you tell yourself about what those symptoms mean.
Lesson 4: Let Go Of the Past With Grace – Grieve Well, and Know When to Move On
Elizabeth Kubler-Ross’ stages of grief (denial, anger, bargaining, depression, acceptance) are just as applicable to people who are diagnosed with chronic illnesses as they are to people who are diagnosed with terminal cancer. That is because people with chronic illness have to negotiate the loss of the person they were before their diagnosis. I spent maybe five years of my life caught in a vicious cycle of anger, bargaining, and depression. I couldn’t allow myself to transition to the final stage – acceptance – because I couldn’t recognize that I was, in a sense, grieving a death. The fact that my illnesses were triggered by a traumatic death (the suicide of a close friend) further complicated my understanding of what was happening for me emotionally. My advice to others would be to recognize your need to grieve, and grieve well. Maybe you need a symbolic gesture (for me part of the acceptance process was getting rid of all of my old soccer cleats, jerseys, and trophies) or a way to vent your anger and fear. Whatever it is, do it. There’s no need to justify your process to others, who may not understand what you are doing, but you owe yourself that period of mourning. Then, when you arrive at the time for acceptance, embrace it wholeheartedly.
Lesson 5: Embrace Yourself for Who and What You are Today
I wasted so much time trying to get back to the person I used to be, only to discover that – at sixteen, nineteen, or twenty-one – there was no ‘going back’ to my twelve year old self. One of the confusing tragedies for children and adolescents diagnosed with chronic illnesses is that it comes at a period of life that is already marked by extreme change. Your discovery of the person you are, the person you are coming, is marred by the persistent presence of illness. It was only after I left adolescence behind, recognizing that I would never get it back, that I was able to look at the person I had actually become. I had to learn how to love that person, and not constantly compare her to the person she could have been. For so many years I refused to love myself, and that is one of my deepest regrets.
Lesson 6: Find New Goals and Dreams
One of the reasons I had so much difficulty transitioning to the stage of acceptance was that, even at age thirteen, I had such a clear picture of what my life was supposed to be. I was supposed to work hard and become my class valedictorian. I was supposed to letter playing varsity soccer. I was supposed to attend an Ivy League school. I was supposed to become a famous novelist. I was supposed to do something significant to change the world. Those are a lot of weighty dreams to come crashing down on a child, and for many years I suffocated under the weight of them. Now that I am older, I can recognize the extreme pressure I put on myself, and feel sorrow for the way I drove my younger self so hard to become something significant. Once I was able to let go of that picture of what my life should be, I was free to imagine what it could be. I am now convinced that the dreams and goals of a mature young woman who has learned what it is to lose everything she ever wanted are a far more substantial thing to build a life upon.
Lesson 7: Let Other People Share Your Pain
Isolation can become a self-fulfilling prophecy. Pain isolates us because no one else can feel what we feel. But we make a mistake when we assume that, because no one feels our pain, our pain should not be shared. For a long time, I refused to share my diagnoses with others. Since there are no visible symptoms associated with CFS and Fibromyalgia, I could easily get away with looking ‘normal’. But whenever I had a flare up and had to cancel plans at the last minute, or became less emotionally present and accessible to my friends because I was consumed by my own depression, I was creating a little bubble of social isolation. Over time, I began to recognize this and let people into my pain, one and a time. It was a slow process, but one that I have never regretted. My friends have admitted to learning much from me as they try to care for me in the hard times; they have also gained a fuller picture of what it is like to live the life that I do. In return, I have gained a group of people who I can count on to cook me a meal when I’m bedridden, pray for me, and just listen to my story. In terms of trade off, I often feel that I am getting the better end of the deal.
Lesson 8: Have a Routine – But Be Flexible
In the early years of my diagnosis, my life was utter chaos. One day I would sleep for sixteen hours, only to turn around and be up for the next thirty-six hours straight. There were nights when I awoke in excruciating pain that made me cry out, and many more nights of deep depression where I cried myself to sleep. I could go almost a week without leaving the house. My life was without the everyday anchors that tell you what you are responsible for and how to balance your needs and obligations. As I have learned to manage my illnesses, I have discovered that having a consistent time when I get up and go to bed, weekly social anchors (scheduled times when I will be with friends), consistent times when I cook healthy meals for myself or go jogging with a friend, are essential to ensuring that my worst flare ups are less frequent. Of course, I have bad weeks when I know that a jog will do me more harm than good, and I adjust accordingly. But routine has been one of the greatest gifts I have given myself in the years since my diagnosis.
Lesson 9: Adjust Your Expectations (AKA Learn Your Values and Priorities)
Having CFS has meant that, on a typical day, I have half to three-quarters the energy of a ‘normal’ person. On bad days, I have significantly less. In an age that tells young women we can, and should, do everything, I find myself reminded on a daily basis that this simply is not true. Rather than seeing this as a loss, I have found it to be an incredible opportunity to clarify my priorities and determine what really matters to me. If I know I only have energy to do one or two things once I get home from work, I will make sure that those one or two things are nourishing to my soul and to the souls of others. That has meant that my house may be messier than I would like, but I have deep and meaningful relationships with my boyfriend, my roommates, and the young boys in my neighborhood that I held tutor; those relationships have grown out of the quality time we are able to spend with one another. Chronic illness has shown me that being forced to make a choice about what matters to you is a good and necessary thing.
Lesson 10: Draw Strength From Your Weaknesses
This may seem counter-intuitive, but there is a type of strength that comes from embracing your weaknesses. I am a person living with a chronic illness. In a fast-paced world that demands we be young, healthy, and dedicated in order to succeed, I am a disabled person who does not fit into the prevailing narrative of the day. But living on the fringes of the mainstream narrative of American life, I have discovered that there are many others like me. The very thing that ensures I don’t fit in, the thing that has taught me to look at life differently, has put me in the position to befriend and care for people on the fringe. It is what enables me to write this blog. It is what enables me to live life vulnerably, in the hopes that my own vulnerability will become strength for others who are vulnerable. The truth is that, sooner or later, everyone will find themselves in a state of failing health; even those who are at the heart will find themselves pushed to the outer rim. I’m not being morbid; I’m being realistic. The way I choose to live with my chronic illness has enabled me to have the strength to sit with people who are experiencing unimaginable grief and pain, and be a loving presence to them. This strength is a gift to myself and others. I am humbled and grateful to possess that gift, and I am convinced that there are more people out there with the capacity to be this gift for others. Perhaps you are one of them.
Lesson 11: Become Your Own Advocate
This is a lesson that, I think, comes late for many people living with chronic illness. We have to get to know our own illness first, familiarize ourselves with its contours and learn not to be ashamed of its implications, before we can find the strength to advocate for ourselves. But we must all be advocates. We must be willing to push back when doctors tell us, “There is nothing I can do,” or worse still, “There is nothing wrong with you.” We must be willing to educate ourselves, our families, and our friends, so that what is happening to us seems less foreign, and we are not isolated by our illness. For some of us, advocacy will also entail advocating on behalf of the chronically ill and disabled community as a whole, in order to improve access to resources, change harmful and prejudicial thinking, and remove the stigma commonly associated with ‘invisible’ disabilities. Learning how to become an advocate can be an empowering experience, and empowerment is an important thing for people whose lives are all too often dictated by their illness.
Lesson 12: Stop Placing Limits on Yourself
Once I became ill, my new mantra was, “I can’t do x and y, because I have CFS and Fibromyalgia.” As a result, I stopped trying new things. I was no longer up for spontaneous adventures with friends. I stopped going to school. For many years I didn’t date. In some ways, I stopped living. In the beginning I think there was some wisdom to my mantra. I was young; my illness was sudden and extreme. In a period of months, my whole life had changed. Taking some time to withdraw, to learn how to cope with my altered reality, was a good and wise thing. But as the years went by, and I continued to live with that mindset, I watched as CFS and Fibromyalgia came to dominate my reality. It has taken me many years, but I have slowly learned to change my mantra from, “I can’t do x because I have CFS and Fibromyalgia,” to “I want to do x, but because of my CFS and Fibromyalgia, I need to think carefully about how to approach it.” As a result, my life has become much richer. I have run in several 5Ks. I have traveled to distant countries. I have thrown surprise parties for friends, backpacked through the Sierras, rock-climbed in Joshua Tree. I’ve taken dance classes; I’ve tutored children in my inner city neighborhood. I now have a very full, and fulfilling, life because I have learned that having a chronic illness does not mean I have to stop living.
Lesson 13: Remember that You are Not Other People
While all of these are still ongoing lessons for me, this one has proven to be among the most difficult. How we love to compare ourselves! And just as I used to make comparisons to my twelve year old self, so I often still compare myself to the people around me who don’t have chronic illnesses. How happy they look! How productive and pain free! But I’m going to let you in on a little secret: not once, in the fourteen years that I have lived with these illness, has comparing myself with others improved the quality of my own life. I am no wiser, no stronger, no healthier, when I make these comparisons. If anything, I am diminished by the false perception that, because other people don’t share my struggles, life must invariably be easier for them. As I grow older and take the time to really invest in the lives of the ‘healthy’ people around me, I find that this simply isn’t true. Life is hard for all of us. Those of us with chronic illnesses shouldn’t make our realities any harder by holding them up against a false metric we can never hope to achieve. Instead, focus on the small, daily victories that make your life better. Which leads to…
Lesson 14: Never, Ever, Ever Give Up on Yourself
Seems like a kind of bullshit lesson to end on, right? But this isn’t sentimentality talking here. I’m not suggesting your life is some kind of Disney Channel movie where, if you believe hard enough, you will find a way to overcome the limitations of your illness. For many of us, illness will be our reality for the rest of our lives. I’m not suggesting otherwise. When I say never give up on yourself, I’m saying precisely that. There will be tough days when you don’t want to fight any more. You’ll want to just let the pain, the fear, and the disappointment wash over you. I’ve done it far too many times to convince myself otherwise. And I will probably do it again. But there has to come a point where you tell yourself, “Enough self-pity. I know this is hard, but doing nothing, giving up, is only magnifying my pain. It’s time to get up and start trying again.” Then you take a shower, or your medication. You go for a walk or call a friend. You ask for help. And slowly you find that, while the pain and the sickness doesn’t go away, it ceases to define you.