Why We Need to Have Compassion for People Living With Chronic Illnesses
“You’re hard to make plans with.”
“Maybe you should exercise more.”
“Your doctor can’t help you anymore.”
“You only seem to be tired when you don’t want to do something.”
These are all remarks I have received since I got sick. The last one, though, was the one that vibrated to my core, attacking my deepest insecurity: people not believing what I was experiencing; perceiving me as dramatic, lazy, weak. At my weakest, I allowed these thoughts permeate what I knew to be true, questioning whether I was really ill. When doctors and loved ones suggest that it’s “all in your head,” it’s easy to begin to wonder the same thing. This assumption perpetuates a society that lacks patience and thorough understanding for chronic conditions and disability. It’s a dangerous assumption that strips the chronically ill of assurance from the only person who can truly believe and advocate for them: themselves.
It was a chilly spring in Boston when I poured my usual cup of morning coffee. Over the past few months, I had noticed that my usual cup before breakfast slowly turned into two, sometimes even three, just to break through the brain fog and fatigue I awoke with. It didn’t seem unusual; I was a college senior, balancing four jobs and a personal life. Everyone was tired. Mug in one hand, I zipped up the black robe that had been hanging in my closet for weeks and walked out the door.
“Your blood work all came back normal. You’re a healthy 22-year-old. We would like to prescribe you an anti-anxiety medication.” I looked at my unconcerned doctor, his voice echoing, my head in a thick fog. The fluorescent office lighting made my skin tingle. I lifted my heavy, aching body off the exam table, tears welling in my eyes. Not two weeks earlier, I had been full of life and energy, biking over 10 miles a day, looking forward to my post-grad life and career. Then one morning I woke up in an impenetrable mental fog with deep, bone-aching exhaustion. My doctor cast it off as a common virus, instructing me to “walk it off.” So I tried. Until I couldn’t.
My personal struggle is with chronic Epstein-Barr virus (EBV), an infectious disease that is the result of a compromised immune system. I was once cast off by a doctor who said that “95 percent of the population has Epstein-Barr,” which is true. It is a very common, dormant virus that causes mononucleosis. But this isn’t your schoolyard mono. For most of the population, EBV is encountered as a young adult, in the form of mono for a few weeks, then never heard from again.
For a select few, Epstein-Barr takes on a life of its own and becomes a chronic issue resulting in severe brain fog, debilitating exhaustion, and physical aches and pains. It’s a stealth infection that your body does not recognize is there, re-activated by immense stress and a compromised immune system. Imagine a thief running through the shadows of my body, hiding itself in my muscle and organs, waiting for the right time to take over. Once the infection re-activates, it can take months to years to get under control. No amount of sleep can restore me and a small exertion of energy can leave me bedridden for days.
With over half of all adults having one or more chronic health conditions, these realities are all too common. Having a chronic illness is isolation in its purest form. It is having to fight a system that is built to fight against us, to not believe us. I do not fault those who do not understand; I fault those who are unwilling to understand. One of the biggest issues that those with chronic conditions face is doctors, friends, and family not believing what they are experiencing. When your closest people question whether it is all in your head, it then becomes easy to wonder the same thing. This is a dangerous road to go down.
Our society prides itself on efficiency, speed, achievement, numbness. We are taught to do more, to be more, to multitask, while burning the candle at both ends. Fatigue and exhaustion are worn as a badge of honor — you have worked hard, achieved something, dedicated your energy to something of meaning. We thrive off of adrenaline — feeling high, useful, productive — and the structure of our society validates those feelings.
Disability or illness is viewed as a wrench thrown into this machine. Symptoms indicative of deeper rooted health issues like fatigue, non-restorative sleep, body aches, and brain fog, have been normalized as physical strain resulting from our fast-paced lives. When our bodies fall ill, it is viewed it as a nuisance or interference. To heal, we swallow “fixes,” such as medications that allow us to carry on with our lives while our bodies are down. Modern medicine created these drugs to help us on our path to healing, but we have confused them as the path of healing.
My body was warning me to slow down, but I couldn’t hear it over my incessant need to achieve, to remain productive, focused, and ambitious all the time. It wasn’t until I woke up one morning with such debilitating exhaustion that I couldn’t get out of bed that I realized something was really wrong.
While all of my friends began their post-graduate careers, I found myself struggling to muster the energy to take the train to work every day, ultimately forced to leave the working world and move home. I fell into an angry, depressed state — frustrated at the world for handing this to me and frustrated at myself for not catching it sooner. I spent four consecutive months in my bed, leaving occasionally to go to yet another doctor’s appointment where I was either told it was all in my head or handed a misdiagnosis and the wrong medication. My healing was slow, molasses improvements that left me feeling defeated, depleted, and sad. Sad for my current state, sad for the life I used to have, and sad for the people who I felt were burdened by me.
Then one afternoon, I drove myself to the doctor’s office — my brain fog having subsided enough for me to drive. As I sat alone in my car, rays of sun shining down on me, I felt an unfamiliar pang of warmth. It took a moment to recognize what I was feeling: Joy.
As I began to sob in that parking lot, I let feelings of hope, relief, and absolute exhaustion wash over me. I felt the anger I had been holding on to for months, years, subside. I thought of how grateful I was to be here, behind the driver’s seat, with a little less pain, a little less fatigue. I thought of my friends fighting their own battles, health or otherwise. I thought of the immense cruelty and anger in the world, and I thought of the hope and the joy that always seemed to outshine it. And right then and there, I sought gratitude. Chronic illnesses and chronic pain come in all different shapes and forms, some with diagnoses and cures and others without. Not all people have the luxury of being able to put their conditions in a dormant state. But for those who have the energy and desire, the radical act of embracing hope and gratitude in the face of chronic illness can make all the difference in an otherwise difficult existence.
I want to urge others to pause; to really slow down and listen to your body. We, as a society, need to be kinder and more understanding; to encourage compassion and empathy, both towards ourselves and others. One of the most potent lessons that has come of my experience is that it really does not take much to feel loved and cared for. And in turn, it does not take much to make someone feel loved and cared for. People are strong and resilient, often concealing their hardest struggles from those around them. A few close friends of mine struggle with their own chronic illnesses and pain, which I found out after I opened up about mine.
When I expressed the feeling of not wanting to live anymore, my friend perfectly summed up the experience. It does not mean that we want to end our lives, but instead that we can’t imagine a life feeling like this every day, and don’t want that life. Has this made me a darker, more complex and complicated human? Yes. But it has also made me a more compassionate, kind, and understanding friend and advocate.
Those fighting their own battles, health-related or not, need to know the importance of self-advocacy. No, you are not needy. You are not annoying or high maintenance or any of the things that you may be made to feel. You are brave. You are trusting your instincts because no one knows your body better than you do. You have the right to question your healthcare professionals, your prescriptions, and your insurance company. With the state of our healthcare system becoming even more uncertain, it is more important now than ever to trust the only person you know to be telling the truth — you. And trust your friends to be telling their truth. Compassionate, kind care begins with believing. If there is no place for my illness, then there is no place for me.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.
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Thinkstock Image By: Kichigin