I write this article with sharp pain piercing my left hip, swollen hands, fatigue as heavy as the depression accompanying it, and tears rolling down my cheeks.
Less than 72 hours ago, I was excited as I soaked in the sun and sounds emanating from the various stages at Austin City Limits. Indeed, this can’t be the same woman screaming with delight and body rolling to the beat amid a sea of music fans. No, it can’t be.
But it is.
Unfortunately, experiencing a good time comes with a hefty price for me and millions worldwide who suffer from an autoimmune disorder.
I remember the last month and year I felt well: January 2020. In 2019, I traveled back-to-back from one international city to the next while meeting multiple deadlines, requiring very little sleep and exhibiting no concern about an impending health crisis. Things were looking up as a successful and primarily healthy woman in my early 30s. I married my husband and had a beautiful farmhouse wedding, visited multiple countries – two of which were on my life’s bucket list – attended a couple of dream concerts, and experienced other life wins.
Then came January 2020. The symptoms were sudden – intense joint pain, inflammation, and debilitating fatigue. Doctors ran many blood tests, and I was met with an “everything’s normal” apathetic response. As if the mental strain from living in a pandemic wasn’t challenging enough, I contended with the physical and psychological anguish stemming from an unknown ailment doctors couldn’t identify. Then, in spring 2021, after a referral to a brilliant rheumatologist, I was diagnosed with undifferentiated connective tissue disease (UCTD).
‘UC-what?’ I wondered to myself. Usually, when you think of autoimmune disorders, thoughts of lupus, rheumatoid arthritis, or Hashimoto’s may come to mind first. However, there are over 100 known autoimmune diseases – and UCTD is one of the lesser-known disorders.
Often, I’ve felt isolated in my battle, but the stats prove I’m not. In the U.S. alone, it’s estimated that over 50 million people have an autoimmune disease, and approximately 80% of all patients diagnosed with an autoimmune disorder are women. Research conducted by the National Library of Medicine (NIH) shows autoimmune disorders present a “clear gender bias,” with a more significant occurrence among women at a rate of 2 to 1. And for women like me who are part of these staggering figures, we don’t look sick – which adds another level of complexity to the illness.
Despite presenting a vibrant disposition on Instagram and putting on a fresh face for source interviews and in-person events, I contend with a silent war within. This personal battle is comprised of acute pain and emotional distress stemming from putting on a mask for the sake of my career and the internalized pressure of needing to “keep it together” for close loved ones. Alex Schrecengost, CEO of Culture With Us, can relate.
Last November, Schrecengost was diagnosed with transverse myelitis, an excruciating disorder as a result of inflammation of the spinal cord. Moreover, she has a lesion on her spine that’s caused permanent scarring. Depending on her activity levels, the pain can be so severe that it affects her ability to walk, type, or pick up items.
Schrecengost is going through rehab and taking medications to help keep the pain and fatigue at bay. Though she’s been met with support, some in her network still don’t grasp the gravity of her disorder. “Everybody has been really supportive – some people have not because they do not understand. They’re like, ‘Alex, you look so normal, and you’re doing all these things,’” Schrecengost says. “I have to give myself grace and not do everything anymore – and I shouldn’t have before. I have pain and discomfort and run a company where I have to be on for customers, friendly for my team, and always show face. I want to be there for my team, but it’s been really overwhelming.”
Additionally, the rollercoaster of being part of fast-paced industries such as wine and spirits like Schrecengost and the journalism world, in my case, can be a source of anxiety since stress – even the good kind – can cause a flare-up of symptoms from the disorders. For example, within the last nine months, I’ve had to decline multiple opportunities to travel abroad and special assignments due to UCTD’s grip on my body. UK-based journalist Lola Christina Alao, diagnosed with lupus 13 years ago, also cites stress behind her flare-ups. “I’m lucky enough for it to be mild the majority of the time, but stress is a huge trigger of lupus flare-ups,” Alao says. “When my lupus was worse, I could wake up any day with joint pains in my wrists, knees, or ankles – for no reason – or swollen, painful glands.”
Some days are worse than others physically and, subsequently, emotionally, as I’m reminded that I’m not the woman I was merely four years ago, but I find myself at peace with my condition. Part of this peace stems from learning my limitations, which requires the underrated quality of modesty. Most associate humility with how a person dresses, but the other application of the word is moderate in appraising one’s abilities. When I apply modesty, I give myself grace on the most challenging days to only knock out a portion of my to-do list and rest.
Schrecengost also places a high value on modesty and grace. She adds, “I manage my limits and say, ‘Okay, I’m going to get through this part of my list today.’ Then, I’m going to lie down and forgive myself. It’s a lot mentally, and it’s something that I’m not going to fix overnight. I’m definitely not going to be at peace with it quite yet, but I’m trying to be.”
In a world constantly in the mindset of nowness, I find rest to be just as essential as accomplishing tasks on your agenda. Alao also emphasizes the importance of keeping autoimmunity in perspective while practicing mindfulness. “I like to remember that not feeling my best is temporary and tell myself how grateful I am to be in my body despite having this condition,” Alao adds. “If I have a flare – or feel one starting – I pencil in time once I’m done with work or social commitments to help my body recover, whether that’s having a few early nights to help calm the inflammation down, cooking a nutritious meal, or doing some yoga.”
In a public discourse, I heard a quote that resonated with me on the most challenging days: “Joy isn’t contingent on circumstances.” Tapping into my inner joy has helped me to endure my hardest days. Prayer and keeping a gratitude journal have benefited me the most as I reflect on even the simplest forms of joy – a good cup of coffee, the crisp air of fall mornings, and the ability to appreciate nature – all of which are gifts despite my ongoing health challenges. Reflecting on her joys, Schrecengost mentions hers stems from the caring support she’s received from her husband and two sons – and their board game nights (they’ve been “obsessively playing Catan,” she mentions). Another aspect of joy that can replace hopelessness is acknowledging the headspace you’re in. Every day won’t be your best, and you can fret temporarily. “[Don’t] pressure yourself to be happy when going through something like this. It’s okay to give yourself time to feel fed up and frustrated, then come out on the other side when you’re feeling better. I find more joy that way than not allowing myself to process my feelings,” Alao adds. Though there aren’t enough affirmations in the world that can shake the feeling of defeat on my darkest days, I take comfort in knowing I’m not alone on this turbulent journey – and it’s okay for me to mourn my past self while being joyfully present.