Patient Spotlight: Rachel F.
Finding Human Connection
Throughout Chronic Illness
I did not grow up as a sick child, something I now wish I’d never taken for granted. Although I can see the red flags of idiopathic condylar resorption (ICR) starting when I was as young as twelve years old, I didn’t really come face to face with the reality of chronic illness until my late teens and early twenties. That’s when managing my worsening symptoms became a daily chore, when treatment after treatment failed, and I had growing suspicions that this was so much more complex and so much worse than I had ever imagined.
When those suspicions were confirmed, and I learned at the age of twenty-three that my TMJ dysfunction was actually a progressive bone disease that only jaw surgery and prosthetics could cure, my world flipped upside down. On the one hand, I felt validated by my newfound surgeon in a way I never had before. After years of so many doctors, dentists, and orthodontists having no idea what to do with me—washing their hands of me at best, blaming and gaslighting me at worst—finally, finally someone understood and knew what to do. There was a solution! On the other hand…well, I had no idea just how brutal the next two years would be, as I waited for surgery and my symptoms rapidly progressed.
While I’ve learned so many positive, invaluable lessons during this time, a painful reality I’ve come to swallow is that chronic pain and illness can be relentlessly lonely and isolating. Your life can get very small, very quickly when so much of your time and energy is devoted to fighting pain, fatigue, eating problems, anxiety and depression, the stress of navigating the healthcare system, and whatever other host of symptoms that threaten to derail your day, every day.
In a society that expects everyone to be perfectly happy and healthy all the time, we have no idea how to treat someone who’s almost always unwell.
Rare and mostly invisible illnesses like ours are complicated and exhausting to explain, often leaving people more shocked and confused than supportive and understanding. Stubborn, long-term pain you can’t troubleshoot away makes others intensely uncomfortable, and it’s amazing how quickly friends and even loved ones can abandon you once you’re not as “fun” as you used to be. It’s like people think: “You’re sick? No problem! Let me bring you soup and Tylenol and you’ll be good as new in ten days, max. Wait, you mean you feel sick…all of the time? Oh, goodness. So, you can’t go out for drinks this month? Or the month after? What can you do, exactly? Watch…movies? While you ice your face and wait for your meds to lull you into oblivion? Oh, okay…let me check my calendar and I’ll get back to you.” (They don’t). “Feel better soon, okay?” (You won’t).
While some of this exchange is a tongue-in-cheek exaggeration, for the most part, it’s not. I'm so blessed that my family and closest friends have stood by me, but my limitations can be hard for others to understand. Mentally, this illness has consumed my headspace and drained my emotional energy more than I ever could have imagined, leaving little leftover to share with friends. Physically, I often have to choose between being social while enduring the pain, or escaping it with sleep-inducing, not-safe-to-drive medication if it’s too overwhelming. Increasingly it’s been the latter, creating an endless cycle of frustration with my body that can’t always help me meet my need for companionship.
While the loss of my jaw function and facial features has been devastating, it is the loneliness, the loss of certain friends and my social life, that has gutted me the most. I grieve the person I used to be before I got sick—the places I traveled, the hobbies I enjoyed, the work that I did, the people I loved. The nights that I used to spend out with friends or on dates, that I now spend at home with my ice packs and painkillers.
I’m grateful, though, to have picked up a healthy arsenal of coping tools along the way—the most helpful of which has been to resist comparing myself to others or worrying what they’ll think of me if I need accommodations.
As a young adult, there’s a certain pressure to be out in the world having the time of your life, living up to this kind of able-bodied ideal. While the grief that comes with not being able to do that is valid, I’ve found myself to be much happier and at peace when I accept that my body needs rest and care right now, and that there’s nothing wrong with that.
That’s why I don’t have words strong enough to convey how much this ICR support group has meant to me, from the overwhelming love and support I received on my first post, to the continued encouragement as I prepare for my upcoming joint replacement surgery in a few months. I don’t know where I would be without these wonderful people who truly understand, no explanations necessary. Who offer their love and advice unconditionally, who remind me I’m not crazy and my feelings are valid. It’s the support of people in this group that inspired me to open up more to my therapist and loved ones, to explore better physical and mental health treatment, to find ways to continue to socialize and connect with others in adaptable ways. And most importantly, they’ve inspired me to stop skimping on the love and compassion I have to offer myself.
With every encouraging and vulnerable message or post, they help give me the courage I need to get through one more day, to do the next right thing… because that’s all any of us can do, when the grief is overwhelming, when you’re surrounded by well-intentioned faces but still feel left behind. Just the next right thing—that’s more than enough. How ever you’re coping, whatever you’re able to accomplish right now, I promise it’s more than enough. Remind yourself of that when you feel alone, consumed by feelings that threaten to swallow you whole. This journey is not for the faint of heart and you wouldn’t be here if you weren’t a total badass.
Let your courage and resilience surprise you. Remember that there is a community of loving people who came before you, and will come after you, and will support you through the in-between. We’re here for you, and you’re not alone.