Living with an undiagnosed debilitating medical condition in the United States feels like trying to navigate a maze blindfolded. Each day brings new challenges, and the uncertainty can be exhausting. If you find yourself in this situation, you're not alone. Here’s a peek into what life is like, and some tips on how to cope.
The Roller Coaster of Symptoms
One of the most frustrating aspects of having an undiagnosed condition is the unpredictability. One day you might feel somewhat okay, and the next, you’re rendered immobile by pain or fatigue. It’s like your body has a mind of its own, and no two days are the same. Each day feels worse than the day before.
The pain began in my T4 area, which is part of the thoracic spine, located roughly between the shoulder blades. It felt as if the area around my spine, about the size of a fist, was tight like a rubber band ball and never eased up, no matter what I did. Over the past couple of years, my muscles have often felt like they were on fire. This sensation impacts my extremities, leading to severe cramping, coldness (verified by a thermometer), and my ability to move around is becoming more limited. Trying to work with nails, hammers, screws, screwdrivers, and even keyboards is very challenging. I've given up driving since I'm not mobile enough to handle it, and car travel is agonizing due to the pinching and compressing pain when sitting upright. Any kinDiscover the daily struggles and resilience of living with an undiagnosed debilitating condition in the U.S. Tips for coping and finding a new normal.d of real farm work has been non-existent for over five years now.
The Doctor Odyssey
In the U.S., finding a diagnosis can feel like a never-ending journey through the medical system. You’ll likely visit numerous specialists, each with different opinions. Tests, scans, and more tests – it’s a whirlwind. And sometimes, despite all the poking and prodding, you still leave without answers.
The Financial Strain
Healthcare in the U.S. is expensive, and dealing with an undiagnosed condition can drain your wallet quickly. The cost of specialist visits, diagnostic tests, and treatments adds up. And if you can't hold down a job because your pain makes you unreliable, the financial stress piles on even more. When you’re without financial assistance, every medical bill feels like a mountain. Not only am I without financial assistance, but I'm also unable to go anywhere. Car travel by sitting upright in a seat hurts. The pinching and compressing pain makes it unbearable.
Lost Passions and Adapting to a New Reality
I miss going on hikes, running, biking, boating, and fishing. I still try to do something, anything, but I often end up making things worse. I’ve had migraines since high school, and they became much worse by my mid-20s. By the time I reached 30, the migraines were almost daily. Most of my week was consumed with trying to push through a migraine. Luckily, living in Colorado, I was able to purchase marijuana, which helped a lot with the pain and nearly eliminated the migraines. But now, as my spine continues to break down, my "on-my-feet" days are becoming fewer, and my distance traveled shorter. "On-my-feet" time is now measured in hours. I find myself staring at the fan more hours than I'd like. I'm trying my best to adapt, and so are Julie and the kids, but it’s very difficult.
The Emotional Toll
Living in limbo takes a significant emotional toll. It's easy to feel isolated when no one seems to understand what you’re going through. Anxiety and depression are common companions on this journey. The uncertainty can make you feel like you're losing control of your life. And now, even focusing can be hard, adding to the frustration because circulation issues cause vision problems too. It’s also getting hard to take deep breaths – something I try to do as part of daily meditation, but now it causes pain.
Despite all this, I'm not depressed. I have my animals to help me through life. Missy and Carly, our dogs, and cats - Roary & Houdini, are my lifelines. Beyond that, my family keeps building the farm. Because of this, we have sheep, pigs, chickens, turkeys, ducks, and a young bull named Chuck. My born-into family told me they discarded me and wrote me off, and that feeling is strong. I'm working on a book titled "Narcissists All Around Me: My Chaotic Journey as a Scapegoat," where I delve into this journey. I’m also trying my best not to be a victim, even starting my own blog and soon, a YouTube channel where I document what’s going on. I hope to make some money where I can, even if I’m unable to get up on my own.
Tips for Coping
Build a Support Network: Surround yourself with friends and family who listen and provide emotional support. Connecting with online communities of people facing similar issues can also be incredibly comforting.
Keep a Health Journal: Documenting your symptoms, triggers, and patterns can help you gain some control over your situation. Plus, this information can be invaluable for your doctors.
Advocate for Yourself: Be your own biggest advocate in the medical system. Don’t be afraid to seek second opinions or ask for the tests you believe are necessary.
Explore Holistic Approaches: Sometimes traditional medicine doesn’t have all the answers. Exploring holistic approaches, such as diet changes, acupuncture, or mindfulness, might offer some relief.
Stay Informed: Keep up with medical research that might relate to your symptoms. New discoveries happen all the time, and staying informed can help you bring new ideas to your healthcare team.
Seek Financial Help: Look into nonprofits or community organizations that offer financial assistance for medical needs. Sometimes local agencies can provide help with bills or guide you to resources.
Finding a New Normal
Living with an undiagnosed condition means redefining what “normal” looks like for you. It’s about finding balance and learning to live in the moment. It’s tough, but with resilience and support, you can navigate this challenging journey.
Remember, you’re stronger than you know, and every small step forward is a victory. Hang in there, and take it one day at a time.