How My Chronic Illness Changed My Life For The Better
While driving to work one day last Autumn, I passed a middle-aged woman in my neighborhood running along the trail near my home. It was a beautifully crisp fall morning; a little chilly, but perfection in a runner’s mind. I could see the smile on her face as she strode down the trail, aware of nothing but the weight of each step on the pavement and the wind against her sweat-streaked forehead. She looked so free.
Immediately I felt a lump forming in the back of my throat and tears well up behind my eyelids. As I tried to bring awareness to my emotions and figure out specifically what I was feeling, it clicked. What I was feeling was resentment.
It wasn’t until I was sixteen that I realized my passion for running. At that age my life was full of stressful and confusing emotions, and running became my blissful escape. Whenever life became more than I thought I could bear, I tied my laces and let my feet pound the pavement until it all escaped my body through my sweat and heavy exhalations. During a run, I felt free. I felt invincible. I felt at home.
Right around this time, a movie premiered called The Sisterhood of the Traveling Pants starring Blake Lively and America Ferrera. It didn’t take long before my sister and I became literally obsessed with that movie (we had to have watched it twenty times). Furthermore,
there is a quote from it that has always resonated with me. Towards the middle of the movie, Blake Lively’s character Bridget had just completed a seven mile run through the sand in Mexico with her crush, Eric. As she tries to catch her breath, she says to him, “Don’t you just love to run?” She continues, “ It’s like you’re just in this place where nothing bad can happen to you. Like if you just push a bit further, if you keep moving—“ Eric then finishes her sentence. “Nothing can touch you.”
My last symptom-free memories of running were during the summer of 2014. It was the summer before my world was completely rattled by a new career and life changes. It was my last “normal” summer, as I recall it. My days began by waking up with the sunrise and running three miles with my dog Athena before heading into work. Then, in the late evenings, once the summer heat finally began wearing off, I’d take Athena out again and we’d run anywhere from five to ten more miles. There was not a single part of my body that was not pure muscle. I remember those runs so vividly, remembering how strong and alive they made me feel. There are no excuses for not being in great shape, I would tell myself. Not one.
My 26th birthday is when I first noticed my health beginning to change. It was March of 2016, and I had been flying for United for about eight months. I had just finished working a flight back to Chicago, and had hopped on a flight to Sacramento to visit my parents. I was halfway through my inflight movie when I was suddenly jolted by a severe pain in my abdomen. When I finally arrived at my parents’ home a few hours later, my pain had reached an excruciating level that was enough to take my breath away.
For the next three months afterward, I experienced that same pain, along with a number of other horrific stomach symptoms, that left me spending whatever days off I had in bed with a heating pad.
During this time, my stomach could not tolerate most of my usual foods, so my diet consisted mostly of bland soups and steamed vegetables. I couldn’t even drink coffee without my stomach screaming at me in pain.
Eventually my symptoms lessened and I could somewhat function again. However, my body was never the same.
Eventually I learned that my symptoms were caused by an illness known as Ulcerative Colitis, an autoimmune disease that attacks the colon and causes ulcers to form inside of it. Ulcerative Colitis consists of flare-ups and remission, although you are never completely symptom-free. I now know that those three months of agony in the spring of 2016 were my very first flare.
I wish this was the ending point of my struggle with my health, but unfortunately, it is only the beginning. Before I share the remainder of my story, I want to be transparent and open about why I am sharing in the first place. First off, let me clarify:
I am NOT sharing:
For sympathy. I have spent far too many days feeling sad for myself. Sympathy is not healing, it is not productive, and it is not what I need.
To make my health issues seem more difficult or more important than someone else’s. I am aware there are so many on this earth who have struggles and hurt so deep it would bring me to my knees. I am in no way comparing my struggles to theirs, or making light of anyone else’s burden. Pain is pain; so whether our load is heavy or light, we all are in this together.
That being said, I now want to express that I am sharing my personal story for two reasons, and two reasons alone:
Expression is healing for me. Whether it is through writing or having a connective conversation with a close friend, it is emotionally healing for me to express what I am going through and have my voice felt heard.
To give others hope and encouragement in the midst of their own unique struggles. This world is full of pain and adversity; you can see it by simply walking out your front door. However, when it comes to dealing with our own personal pain, it can at times feel very isolating. This is especially true for those struggling with a chronic illness. I want others who are going through similar struggles to know they are not alone, and to know that there is hope and happiness to be found in the midst of all the mess and muck.
Searching For Answers
Immediately following my first Ulcerative Colitis flare in 2016, I began having other strange symptoms that began to threaten the life I knew so well. I began having debilitating arthritic pain that began in my hands and wrists and eventually spread to my entire body. Also, I began noticing that my limbs would become numb and “fall asleep” several times per day, seemingly caused by nothing in particular. Then, I began noticing stiffness in my joints. I would wake up every morning barely able to move, my joints feeling as though I had run a marathon the evening before.
Additionally, I began experiencing fatigue that knocked me on my backside. And by fatigue, I do not mean “being tired”. It is the kind of fatigue you feel when you have the flu. Simply getting out of bed and brushing my teeth felt like the most daunting of tasks. My body felt heavy and beaten down. I would try to go on an easy run and get so winded after the first mile I’d have to stop. I would sleep for ten hours at night and wake up the next morning feeling like I just worked an all-nighter flight to JFK.
Finally, my memory became affected. I would forget my own friends ’and family members’ names, completely blank mid-conversation, and no-show at appointments because I forgot I had scheduled them in the first place. And I cannot even begin to count how many times I lost my purse or cell phone, simply because I left it wherever I was before. It was maddening.
As the months wore on I became gradually more aware that there was something very wrong with my body. On my good days, the pain was still always there, but I could manage. On my bad days, however, the pain screamed at me in any and all circumstances. I couldn’t stand for more than thirty seconds at a time without my feet killing me. I couldn’t wash my hair because lifting my arms made them ache and burn. Even getting out of bed at times was too large of a task for my body to handle.
For the next three years after my symptoms began, I tried everything to find answers and relief. At first, I thought my symptoms had to be caused by my Ulcerative Colitis, since joint pain and memory problems are also known symptoms. But doctors found no signs of joint swelling or inflammation. They ran tests for cancers, vitamin deficiencies and even Rheumatoid Arthritis, all coming back normal.
Finally, in the spring of 2019, I was diagnosed with a condition known as Fibromyalgia after being referred to a Rheumatologist who had seen similar cases before. At last, I thought to myself, A freaking answer!
Fibro- What?
Fibromyalgia is a chronic disorder of the nervous system that causes all of the symptoms I had been describing to my doctors, including my memory problems or “brain fog”. It is difficult to diagnose and is often confused with conditions that have similar symptoms, such as Rheumatoid Arthritis or Multiple Sclerosis. Because it is so under researched, there is no known cure and very little known treatment. While it can occur in both women and men of all ages, it is most common in women over 40. Fibromyalgia is rare and only affects between two and four percent of the U.S. population.
Although Fibromyalgia (originally named “fibrositis”) was technically discovered in the 1820s, it wasn’t given its current name until 1976. Furthermore, until the early 2000’s, Fibromyalgia was so under-researched that patients would be often dismissed and misunderstood by their doctors. They would seek answers for their unbearable pain and discomfort and be sent away because doctors could not find a diagnosis.
Today, Fibromyalgia is still highly stigmatized and under-researched, causing its patients to often feel invalidated, misunderstood, shamed, and defeated. In fact, people with Fibromyalgia are three times more likely to develop depression than those without it.
In recent years, however, there has been additional research that has been helpful in understanding this disorder better. Studies have shown that most known cases of fibromyalgia began with some form of trauma, either physical or emotional.
A car accident, an assault, or even cancer have been known to be traumas directly correlated with fibromyalgia patients. Pop singer Stefani Germanotta (Lady Gaga) has spoken out about her struggle with Fibromyalgia after suffering from a broken hip in 2015. Actor Morgan Freeman has also spoken out about his Fibromyalgia diagnosis in 2008 shortly after he sustained injuries from a car accident.
I ,too, can pinpoint the beginning of my symptoms to a very specific physical trauma: my first Ulcerative Colitis flare in 2016.
All A Bad Dream
According to the Kübler-Ross model, the five stages of grief are as follows: Denial, anger, bargaining, depression, and acceptance. Contrary to popular belief, grief is not just an emotion that only occurs with the death of a loved one. Grief can be brought on from anything from losing your job, sending your children off to college, to having to sell your beloved childhood home.
While I have experienced other types of grief, the past three-and-a-half years have been mostly filled with grieving the loss of my health, the loss of being a runner, and ultimately, the person I always envisioned I would become.
When I was eighteen or nineteen, I remember my sister telling me one morning that she had had a bad dream the night before. She said that, in her dream, I had some sort of accident or health condition that debilitated me to the point to where I could no longer run. “Oh, wow”, I remember saying, “I can’t even imagine.”
Fast forward to today, over ten years later, and the irony of that moment hits just a little too deeply as I cannot even remember the last time I was able to run. Furthermore, I can pretty much guarantee that that run, whenever it was, did not make me feel free and strong like so many of my runs in the past had. Since my symptoms began, the joy and freedom running had always brought me is no longer alive. My “runner’s high” has since been replaced with a shot ego and week-long muscle recovery anytime I run. I haven’t been able to run more than three miles straight since I was twenty-five. For someone who once had aspirations of running a marathon, it feels quite pathetic. So when I saw the lady running last fall so carelessly in my neighborhood, I felt resentment. At that moment, I would have given just about anything to be able to run again (and actually enjoy it).
Running Towards Acceptance
The truth is, I actually started writing this article nearly a year ago. It was a few days after I had seen the runner in my neighborhood, and I knew it was time to start telling my story and turning my experiences into something positive.
However, by the time I had typed the first few paragraphs, I knew I wasn’t capable of doing so yet. I still carried so much anger, resentment, and sadness regarding my health and all of the things I knew I would forever miss out on because of them. I had not yet reached the acceptance stage of grief, and if I didn’t work hard, I knew that I may actually never get there at all.
So I closed my laptop and set this article aside for a future time when I felt healed enough to finish it...and got to work on myself.
The next day, I scheduled an appointment with my therapist specifically for the purpose of sharing my struggles with chronic illness and discussing ways to move towards acceptance.
A week later, I sat in her office fidgeting nervously as I shared the embarrassment, shame, and sadness of being a twenty-nine-year-old who felt trapped in the body of someone of eighty.
“I feel like a burden a lot of the time,” I choked out. “I cancel a lot of plans these days and can’t do so many of the things that I used to do, and it’s so embarrassing having to explain why because no one seems to understand.”
My therapist looked at me calmly like she always does and said confidently without hesitation, “Do you want to know something about me?”
“Sure,” I replied, unsure of how that was relevant.
“ I have fibromyalgia too.”
I was stunned. Until then, I had felt completely isolated in my struggle with fibromyalgia. I still struggled with my Ulcerative Colitis, but I had my sister to relate to since she had already been diagnosed years before me. She “got it”. But my fibro...no one understood. Not my friends, my doctors, or even myself at times.
My therapist continued to explain that she had been diagnosed with fibromyalgia over twenty years ago. She shared that she learned to accept her symptoms for what they were and not let them keep her from living her life. She also added that yoga has been her go-to exercise for years since she, too, can no longer run like she used to.
And just like that, I felt the weight of a thousand bricks fall off of my shoulders and relief slowly start to seep into my soul. Just by no longer feeling alone in my pain, by feeling like someone finally “got it”, I began to heal.
Suffering Strong
A few months ago, a coworker recommended a book called Suffer Strong by Jay and Katherine Wolf. I had no idea who Jay or Katherine were but it seemed like it would be a positive read (and I was in desperate need of a positive read) so I ordered it that evening on Amazon.
Upon its arrival, the first thing I noticed was, of course, the book’s cover. On it were Jay and Katherine, with Katherine sitting in a wheelchair, one side of her smile lower than the other. Jay was standing behind her adoringly.
It turns out that Jay and Katherine Wolf are a married couple who began a ministry called Hope Heals (also the name of their first book) after Katherine suffered a massive stroke at age twenty-six that left her completely handicapped. At the time, they had only been married for three years, and had a six-month-old baby boy to care for.
The book tells their remarkable story of how they were forced to shift their perspective and find positivity and hope after experiencing their darkest days.
Katherine was also a former model where her job was completely focused on physical appearances. Now, because of her stroke, one side of her face droops and she is confined to a wheelchair. It took her months after the stroke to even be able to eat on her own, and years to gain some mobility and control over her arms.
But instead of allowing their traumatic experience to define them and keep them from living their lives, they persevered and redefined the way they think to turn what they lost into something positive.
“It’s human nature to rebel against losing what defines us,” they wrote. “Our deepest animal urges demand that we store up anything that sustains our sense of identity and helps us keep on living into our desired future. The fear of loss can paralyze us, and redefining it may be the hardest redefining of them all. But losing something familiar or precious can also help us let go of the illusion of control and the weight of expectations that have ruled us our entire lives.”
I cannot even tell you how many times I cried while reading this book. I feel like, in a strange way, I was supposed to read it. It gave me the hope and change of perspective I needed to further move into full acceptance of my health for exactly what it is and make the absolute best of it. It’s what gave me the healing I needed to finally finish this article.
Moving Forward
I still live every day surrounded by my physical pain. My hands still ache every time I hold my cell phone or pour drinks on the airplane. My arms still burn when I wash my hair. Some days I still can’t remember my friend’s name, and a lot of mornings I still wake up feeling as though I have been hit by a semi-truck.
But my symptoms no longer define who I am or the person I am becoming.
Let me repeat that.
My symptoms no longer define who I am or the person I am becoming.
I still have a life to live and a purpose to fulfill on this earth. I still have goals and aspirations. I have joy and contentment despite my circumstances. I have hope.
I currently manage my UC symptoms with medication and a strict Paleo diet, and I manage my fibro symptoms mainly with lots of walking, self-care, and good old-fashioned sleep.
No, I am no longer a runner. I no longer feel the joy of the wind on my back as I stride down the sidewalk, or the endorphins after finishing a ten-mile trail run.
But I have found joy in other places. I now can truly feel the sun on my shoulders as I walk through my neighborhood or hike my favorite trail. I find gratitude on the days where my pain is minimal, and gratitude even on days when it is at its worst.
I savor my time with my friends and loved ones more deeply, and appreciate the tiny blessings that life throws my way.
My pain has brought me great suffering, but it has brought me greater joy and healing. It has forced me to redefine my life and way of thinking. And even though it would be so nice to get through a day pain-free, I still wouldn’t change my journey even if it could.
“Life defines us, but suffering redefines us. Ultimately, hope refines us, transforming us from within in ways we never could have imagined.” -Jay Wolf, Suffer Strong
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