You are not alone
Diana Hanson’s Story
“What you are feeling is real and it is really hard, but there is hope and as much as it feels like it, you’re not alone.”
Hi there. My name is Diana. I’m 27, I’m from Maryland, and I live with chronic illnesses.
It’s difficult for me to describe the person I was before I developed my chronic illnesses, partially because so much has happened since then, and partially because I don’t want to seem disingenuous. So, I decided it would be best to put this responsibility on my mom. I know what you’re thinking: she might be a little biased. Don’t worry, I considered this. She knows me very well, so I told her to be honest. And by all accounts she took the assignment very seriously. She described me pre-chronic illness as generally happy, hard-working, and funny. Thanks mom.
I can tell you that I was a bit of an overachiever. In high school, I was in a rigorous academic program at a school that was about an hour bus ride from my house, I had up to nine or ten swimming training sessions per week, which I never skipped, and I piled on as many AP and honors classes as my schedule would allow. Sleep was definitely not a priority, but somehow, I was able to push through. As a competitive swimmer, I learned to suppress feelings of lethargy, exhaustion, and pain because I cared a lot about improving. I was pretty much always uncomfortable or tired. As an endurance athlete, I was taught to acknowledge pain and move past it to focus on other aspects of my stroke or race. After doing that for so long, I naturally became more efficient at the process, to the point where I was somewhat conditioned to the discomfort. This mindset helped me progress, but it also led me to some serious trouble.
In 2013, I started my college career at a Division One program where I was a student athlete pursuing two science degrees. During my first two years in college, I remember feeling like I was really hitting my stride. I was improving athletically, I was doing really well academically, and I had some great friends. In the spring of 2015, after noticing some differences in my energy, I decided to get a blood test. It indicated that my body had been fighting mononucleosis for several weeks. I had been feeling sick and tired for some time, but honestly, I was so used to that feeling that I didn’t realize how sick I was. By the time I found out I had mono, I figured I was almost done fighting it, so I elected not to take much time off. It turns out that I never fully recovered and during the next year, my health slowly deteriorated. By the spring of 2016, I couldn’t deny it anymore; something was wrong, and I needed some serious help.
My face became pale and expressionless. I couldn’t keep weight on. I would shake at the first sign of stress, and I saw stars when I stood up. My body became so weak that I couldn’t lift anything. I was irritable, over-reactive, and weirdly suspicious of people. The muscles in my face felt heavy, so I didn’t smile anymore. I had trouble using those muscles to enunciate, so my words slurred together. I often couldn’t hold a train of thought in conversation. I was a Division One athlete who now needed a break after walking down the stairs. I was a shell of who I once was, completely absent of my personality or sense of humor. My only recourse was lying in bed all day until I could barely get out of it. I’d feel myself melting into my mattress, unable to move positions, and wondering what my purpose had become. Everyone’s life seemed to keep moving forward without me. Who looked forward to seeing me? Who wondered how I was doing? Did anyone need me in their life?
My parents contemplated bringing me to the emergency room several times, but we came to learn that no one knew or cared to know what was wrong. While I was at school, several doctors told me that being a student athlete was hard, as if I was just a little burned out. I remember going to see an endocrinologist who told me that I was in perfect health. I’ll never forget leaving her office in tears and then going to get my license photo retaken right after. That’s still the picture on my license, by the way, and it still haunts me.
I finally learned the acronym POTS when I did a standing test at my physician’s office. I started by laying down for a few minutes and then stood for several more. She measured my heartrate and blood pressure every minute to see how they changed the longer I stood. I had significant decreases in blood pressure and increases in heart rate the, suggesting that I had POTS. Even though we had a significant finding, she recommended that do a tilt table test, which is a more controlled version of the standing test. So, I went to the hospital, fainted before the test even started, and then was told that I had a “negative test” and was good to go. Even after only a few months of searching for an answer, I was at the end of my rope.
Through a family connection, I set up a meeting with a chronic fatigue specialist. If I’m being honest, I immediately judged the term “chronic fatigue.” Who on the planet isn’t chronically fatigued? I told my mom that we may be in for more of the same disappointment, but this time with a silly name to go with it. After meeting with this doctor, I felt so embarrassed that I ever questioned him. I finally found a physician who took my word for how I felt. He cared about how my life had been impacted and agreed that it wasn’t all in my head. He took the time to investigate my life trajectory and to understand how I went from my mom’s happy and funny daughter to the broken and defeated person sitting in the patient chair in his office. He confirmed that I had POTS and also diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
I returned to college as a student athlete with a diagnosed chronic illness, hoping that my life would be easier than before. But to be honest, the year after my diagnosis was even harder. Just having a name for my symptoms didn’t change them. I got some of my athletic abilities back, but in a final effort to finish my athletic career, I knew I was pushing my body to places it wasn’t ready to go. At the first sign of stress, illness, or anxiety I found myself back to where I was before, talking myself through every step I took and hoping that I wouldn’t be nominated to walk up to the white board in class. I did my best to conserve my energy, but in doing so I became a recluse and barely ever went outside other than for class, practice, or food. As a newly diagnosed patient, I was also trying to measure out the most effective treatment regimen for my body and needs. I’ll never forget those sporadic “good days” when my symptoms felt a little lighter. Unfortunately, they were normally short-lived and only gave me perspective on how bad the “bad days” really were.
The physical ailments were really challenging, but I was not prepared for the emotional hardships that came with my chronic illness. Yes, I was in physical pain, but the tears I constantly shed represented so much more. They were mourning the opportunities I thought I would have had to reach my goals, they represented the deep and persistent loneliness I felt, the embarrassment I felt being unable to control my emotions in front of others, the shame I felt when people told me I was too thin, the excruciating hurt of people telling me I was bringing others down, the remorse I felt when I was rude to people I cared about, the hopelessness of knowing people were talking about me behind my back, the humiliation from glares I got because the friendliness had drained from my face, the disappointment in the friends that I thought would have cared more, and the anxiety I felt about whether I would be able to graduate or have a career or even go to class or practice the next day. On top of all of that, even though I had a diagnosis, I wondered if maybe I was just being overly sensitive and succumbing to my discomfort too much. It was almost impossible to not self-judge when I felt so judged by everyone else. When I fell victim to my emotions, it only made my physical symptoms more pronounced, and vice versa. I was caught in a downward spiral without a way out. That year, I learned that chronic illness is a lot heavier than just a diagnosis.
I finally graduated from college and finished my swimming career by taking it a week, day, and hour at a time. I was devastated that it ended how it did but also relieved that it was finally over. After my graduation, I ran as fast as my broken body would let me off campus, hoping that some of the trauma and loneliness embedded in my dorm room walls wouldn’t follow me home. Of course, this wasn’t something I could just run away from.
As my symptoms persisted, I thought that maybe the old me was irreparably buried below my chronic illness and that I had just permanently changed as a person. But my family and close friends knew the old me was in there somewhere. They were understanding, supportive, and nonjudgmental, which helped lighten the load of that emotional pain. Don’t get me wrong, there were times when even with consistent love and care, I hit some serious lows. Without the grind of forcing myself to go to school or practice, I had trouble finding my worth. Even though it was a struggle, I was encouraged to get off the couch and try things. I felt safe and supported enough to try, so I did, and I failed a lot. I tried to reconnect with friends but couldn’t hold on to relationships, I tried to maintain a part time job but had to take time off, and I’d try to take walks around my neighborhood, but sometimes I’d last less than five minutes.
With mindful management of my symptoms, finding the best treatment regimens for me, and persistent love from my family, I was able to keep getting off the couch without such catastrophic flare-ups. Five years later, and here I am. I’ve had a lot of practice, but I’m still learning to acknowledge how I feel without judgment and to manage my energy accordingly. I have learned, however, that I can accomplish what I want to with a little extra work and some additional sacrifices. It’s completely worth it. In the years since I was diagnosed, I’ve graduated from college with a bachelor’s degree, I’ve obtained my law degree, I’ve passed the bar, and I now maintain a full-time job.
When I asked my mom how I’ve changed, she described me as a phoenix rising from that buried version of myself to the person she knew before I got sick. Internally, I feel like I’ve progressed from who I was before. My chronic illness has given me a newfound appreciation for everything in my life. Any day I spend feeling better than I once did is exciting, any day I get out of bed is a win, and anything I accomplish beyond that is a bonus. I’ve found that with that mindset, not much can bring me down. I enjoy the daily grind because I’m able to experience it.
I appreciate that every chronic illness is different and every patient deals with it differently. I don’t pretend to know how other people with chronic illness feel or that my symptoms and life changes aren’t significantly milder than what others have experienced. Most importantly, I know how incredibly lucky I am to have found a diagnosis and a doctor who would listen. I’d never tell anyone with a chronic illness that they can or should be able to accomplish something because I don’t know anyone else’s story. Until recently, though, I had no idea that some people have stories like mine. It occurred to me that maybe during those years when I felt the loneliest, I wasn’t really alone at all. I now know that stories like mine are everywhere, and unfortunately, they are becoming more and more common.
I’m honored that Ella has given me this opportunity to share my story because I occasionally reflect on the nights I laid in bed in tears feeling humiliated, anxious, hopeless, lonely, and everything else. It breaks my heart knowing that there are people going through the same kind of pain right now. I wonder if I would have felt differently if I knew that on top of the people who loved and supported me, there were people who could relate to what I was feeling. I question if I would have judged myself so harshly if I knew that my pain was felt by others too. I wonder if I would have had more energy on those “bad days” if I spent less energy questioning myself.
When you’re living with a chronic illness, it’s far too easy to feel alone. Reflecting on my own experience has led me to think of those people who are struggling to find a diagnosis, who are trying to exist in an unaccommodating environment, who have a diagnosis but are searching for the best treatment, or who just feel down because existing with a chronic illness is hard. So, to people who know others with a chronic illness: try to be kind, try not to judge us at our worst, try to listen when we need to vent, and try to be the person who reaches out to remind us that you care. And to those out there who are struggling, there are lots of people who are thinking about you. What you are feeling is real and it is really hard, but there is hope and as much as it feels like it, you’re not alone.
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