The Spiral
You’re lying in bed, reminiscing about life just a year ago. You were on your way to accomplishing your goals, life wasn’t perfect, but at least your body wasn’t constantly at war with you. It all happened so quickly. One day you were fine, when suddenly a range of symptoms burst into your life, shattering any dreams you once had. Once simple tasks, like brushing your teeth, putting a few dishes away, or taking a shower, now take Herculean effort, leaving you exhausted the whole day.
In the early days, you didn’t realize that there would also be periods of improvement, a brief moment when you could manage to go out like before, socialize without feeling nearly as fatigued, when you allowed yourself to dream again. Little did you know those dreams would be stolen again as swiftly as symptoms returned the next day, punishment for your delusion. How could you let yourself hope again? Why couldn’t you just have a healthy body?
With the minimal energy you had, you couldn’t help but get lost in a trance of negative thoughts. Your body has betrayed you. God has let you down once again. No one seems to understand how isolating this is. You thought finally getting a diagnosis might bring some sense of relief, but it’s now a reminder that this is lifelong, that there is no hope. Tear-soaked pillows became the norm, leaving you feeling more isolated than ever.
Hoping to escape the pain of reality, you turned to social media. Loneliness scratched at you as you scrolled each day, searched for anyone who might understand. Amidst the thousands of options, you were relieved to find that you weren’t alone. People shared their experiences, even some hilarious memes to laugh at on difficult days. There was one with an amusing drawing of a rat that was particularly relatable, which read, “I’ve got a rare condition called garbage body.” Over time, scrolling through threads of similar content and posts became a part of your daily routine.
Flare-ups still arose, leaving you bedridden for days, but you had something to turn to now, to help you get through those tough days. On a day you were feeling well enough, you agreed to go out with some friends you hadn’t seen in a while. You missed them dearly and were excited to catch up. Everything was going well, with jokes being thrown by all, when you decided to share one of your favorite lines from a post you saw online. Your friends glanced around, laughing uncomfortably as your words seemingly floated in the air of awkward silence, “I may as well be dead, my body seems pretty useless anyway.” The flow of conversation continued despite the awkward hiccup, but you couldn’t help but wonder why they didn’t get the joke.
Sure, it was dark humor, but if you couldn’t laugh at your situation, was suffering in silence the only alternative? They didn’t understand, of course, because none of them ever had to endure symptoms like yours. They were lucky to have properly functioning bodies, ignorant of the world and culture of chronic illness. You made a mental note to keep those friends at arm’s length, but otherwise forgot the mishap altogether.
After getting ready for one of your many doctor appointments, this one with a specialist you’d been waiting to see for a while, your doctor greeted you curtly and quickly logged into a computer. You tried to listen as they described treatment options and recommendations, but the words “not covered” and “insurance” propelled themselves into the forefront of your mind, allowing nothing else to be heard. They remained there as you made your way home, the pit in your stomach growing bigger as you recalled the size of your savings account: barely enough to cover next month’s rent. A tightness began to form in your throat as you considered the rest of your options. You had checked local resources before, but were let down by countless waiting lists and unmet requirements. You didn’t have enough followers to consider a GoFundMe. Seeking help from friends or family was out of the question; they all struggled to get by without having to cover someone else’s medical expenses.
An overwhelming sense of helplessness enveloped you as reality sank in: you were alone and unable to afford the medical treatment necessary to get by. Things had just begun to get better, more manageable. Now, even the inside jokes you shared with yourself to relieve the pain felt so distant. Dread seemed to consume your days, ruminating on uninvited but well-ingrained thoughts. Useless body. Garbage body. May as well be dead. Fog muffled any laughter, any reprieve you once felt from the words that once brought you solace. Instead, a deafening emptiness echoed within you day by day, pulling you deeper into despair, begging for an end until you give in.
A Way Out
This spiral is a place I knew well. For years, I lived in it. But I found a way out.
Looking back at my own journey, I mistook the comfort of grief for a true companion. Feeling abandoned and forsaken, I let sorrow become the one thing I could rely on. When failure or misfortune inevitably made their way into my life, I knew that while I lay in sorrow, whispers of anguish followed, caressing my tear-streaked face. The ache in my soul was ever-present, but I wasn’t alone. Darkness folded itself around me like a familiar blanket, and I wrapped myself in it, believing its weight was a form of safety. But that comfort was a cage.
When experiencing any type of loss, grief is absolutely necessary, and it’s important to remember that it will manifest differently for each individual. The five stages of grief, according to the Kübler-Ross Model, include denial, anger, bargaining, depression, and acceptance. While the stages are arranged in this order, they are not necessarily experienced in this order. I recognize, in hindsight, that I was stuck in a perpetual cycle of anger, bargaining, and depression, holding myself back from experiencing the other beauties that lay between the lines of my life. I had spent years feeling stranded in a sea of melancholy, grieving the loss of who I had hoped to be before so many illnesses.
It was time for me to stop fueling my suffering, and instead allow myself to exist as I am in this new season of life. I made small adjustments over time to help transform my outlook: I tailored my social media to content that would improve my mood, and eventually deleted most of my profiles altogether; I stayed informed but stopped watching the news every day; I returned to church, hoping surrendering my sorrow to God would free me from suffering (it did); I was more intentional with my time, actively looking for and acknowledging gratitude for the smallest of things. Over time, I realized I no longer woke up with shame or guilt, I wasn’t haunted by the looming sadness that once plagued my entire existence. I had surrendered it all, expectations of healing, feelings of dread, anxious thoughts and overthinking, all of it I gave to God. I had finally entered into the next stage of grief: acceptance.
This doesn’t mean that I never get sad, or don’t think about the life I had once wished for. It simply means that I don’t dwell on it. When those thoughts come, I can acknowledge them and release them for what they are: hopes from the past. I focus on what I have now: a family who supports me unconditionally, a peaceful joy in my heart that I’ve never felt before, and a community of people with similar experiences. Instead of asking God, “why did this happen to me?” I ask, “what can I do with my story? How can I help others? Let me help shine your light.”
This emotional journey has inspired me to help others avoid the mistakes I made, to find the resources I sought, to feel less alone than I did. Implementing small changes in your day-to-day life such as the type of content you consume, the way you talk to yourself, and remembering the small joys, can make a huge difference in avoiding the trap of a perpetual grief. It also allows acceptance to flow through to self-love as you continue to show yourself grace.
By accepting and embracing our chronic illnesses, we, in turn, accept and embrace ourselves as we are.
As always, thank you so much for being a part of this community. I appreciate you reading, and I’m so glad you’re here 🩷
A Note on Support:
If you are struggling with depression or thoughts of suicide, please know that help is always available. You can call or text 988 in the US & Canada to connect with a trained counselor for free, 24/7. You are not alone.
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