“You are so brave…”
I just sat there staring at the message from one of my old co-workers, who had asked me how I was doing that day. My mind raced and I was in no way able to respond to this statement, meant to comfort me, during one of the darkest times in my life.
I had five months earlier gone into a full flare from a degenerative form of arthritis known as ankylosing spondylitis, or commonly known as AS. I also was unaware of several conditions that had been plaguing me for years, being misdiagnosed for years due to my gender, my age, and my tolerance for pain. Ankylosing spondylitis was one of the main culprits, keeping me feeling off, almost regularly — it was as if I had the flu, without actually having the flu, tired, unable to concentrate, constantly in pain and often limping and forcing myself to work, take care of my home and try to carry on as if nothing were happening. I knew in my heart it was more than sacral joint disorder which I had been diagnosed with, without further investigation by doctors, who said, “You’re young, you have an amazing outlook, you’ll get better, we’ll fix you.” I knew better but I wanted to run away from the idea that my body was going through something that would basically turn my world upside down, and it did.
In late February I had been putting away food at work and bent over and heard a popping noise — my sacral joint had come out of place. This is common for me. I pushed through the work day, went home and announced that I needed to relax. I lay on the floor in hopes of feeling better, but everything hurt — my ribs, spine, hips and sacral area were fed up, and they were going on strike. Giving in and realizing I had overdone it, I attempted to get up and felt an excruciating pain run through my hips. I couldn’t stand, I felt panic, anger, fear, and most of all ashamed. Here I am on the floor and I need help standing, walking, I even needed help adjusting myself on the couch. I could see in my boyfriend’s face this look of total helplessness; he by nature is a protector and provider, and he didn’t know what to do to make the pain stop.
After months of seeking out doctors, I was formally diagnosed by a rheumatologist, who informed me it was not just ankylosing spondylitis. I was shocked to learn I have Ehlers-Danlos syndrome, a disorder that affects the joints due to my body not producing enough collagen, spondylolisthesis, degenerative disc disease and it is suspected that I also have fibromyalgia.
For several months I waited to feel better, irritable from pain and steroids, and stressed about how my little family saw me. I was so depressed and anxious that my troubles started leaking out onto social media.
People were telling me of fad diets, supplements that had the magic cure-all, and I was told that if I just cheered up I would probably feel better. I was so annoyed, hurt, angry and above all clueless as to how no one understood. At that moment I realized, I have invisible illnesses, and I had been fighting and pushing myself for so long it had made it become difficult for everyone around me to realize the severity of my situation.
I wanted to take a new approach and turn my feelings of grief, grief over the body that had ultimately betrayed me and turn it into compassion, to being compassionate with myself, my co-workers, doctors, and even people who would see me in public and ask about why I walked funny. The simple fact is these people don’t understand, and meeting confusion or ignorance towards invisible conditions with anger only leads to more confusion and ignorance.
I wanted to show strength and I wanted to be mindfully present for my children. I felt like they were getting the short end of the stick with a mom who at the time was extremely limited. I was struggling really hard with steroids, I wasn’t myself and my body was hating the steroids, but my day had come. I was approved for Enbrel and I had received my first month’s supply. I was elated. I took my injection and was hopeful.
Later that evening I rolled over and felt that familiar agonizing pain set in. I was screaming, the screams left my body and I no longer felt human. After being scared and impatient I dragged my body through my house, down the stairs and into my car, put my car on cruise control and made a trip to the ER. Laying in bed, uncomfortable, desperate and scared, my mind kept racing back to that message — all I could think about was that word, “brave.”
For many of us with chronic conditions, the last thing we feel is brave. This is not about condemning others for trying to bring comfort to those who are struggling. When I think of someone who is brave I think of a police officer, a fireman, or any person who makes a choice and risks their overall well-being for others. I didn’t choose this, it chose me. These conditions are a lifetime, and they can rob you of what you thought you knew about yourself. I wish I felt brave, but the truth is some days living feels like a chore.
There is no hero’s parade, no medal given for surviving another day.
There’s just time, time to reflect, time to attempt to heal, time to grieve, and time to hopefully forgive yourself enough to realize that you may not feel brave, but you are strong.
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Thinkstock photo by Julia_Henze