It’s as if a new perspective has been superimposed over your entire worldview. Even if it’s the same house with all your familiar belongings still there, nothing seems to belong there anymore. There are still familiar aromas in the air, familiar streets, and a familiar reflection in the mirror, but your sense of belonging to this world has been severely damaged.
I felt like a huge chunk of my identity had been ripped out of me when I was given the diagnosis of my chronic disease. I had a disjointed sense of familiarity and belonging. Even the simplest of activities became difficult. I was so weak and exhausted that I could hardly get up off the couch to do a load of laundry. The course of my life was abruptly altered, and I was at a loss as to how to reorient myself.
Previously, I would spend my days working out and engaging in a variety of hobbies, but now I spend most of my time sitting in a chair and looking for information online on how to treat my chronic illness. While I am no stranger to adversity, this has been the most lonely period of my life. I was completely devastated and unable to feel joy again. To live like that was unbearable, and yet I knew I didn’t want to take my life. To be honest, there were times when I felt like I needed to shed this mortal coil and find a new set of limbs to inhabit so that I could resume my existence.
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— Thom Byxbe (@ThomByxbe) July 27, 2022
The symptoms I was experiencing led me to believe I was going crazy before I was properly diagnosed. I had no idea what was going on with me mentally or physically. To get to the kitchen, I had to exert a lot of energy even though I was dizzy. My vision was entirely skewed, I felt drained of energy, and I was suffering from intense depersonalization and derealization. A tremendous amount of pressure, like a vice grasp, was pressing down on my skull.
Since I could no longer judge the speeds of oncoming traffic, I had to pull over. Because of my sensitivity to light, I could no longer read or use electronic devices. My inability to take in my environment made it difficult to do even simple tasks like shopping for groceries; the crowded aisles full of things and people were too much to handle. Since my eyesight was so blurry that I was scared of ever seeing again, I developed an irrational aversion to closing my eyes.
Having endured what seemed like an endless blurry nightmare, I was relieved to find a specialist who could properly diagnose and treat my illness. My diagnosis of Vestibular Migraine, an uncommon and chronic illness, was reached after a brain MRI and other procedures. Very few people—roughly 3 per cent—are diagnosed with this complicated neurological illness. It’s a disease that’s hard to explain to people who have never had it. This condition is profoundly isolating, life-limiting, and incapacitating.
Losing my autonomy was the most trying aspect of this whole ordeal. My mom was the one I always went to for advice and assistance in the kitchen, the bathroom, and in the shower. Never in my life have I felt so reliant on another person. Freedom and novelty have always been two of my favourite things in life.
Even amid such destruction, I found a way to keep going. The faint light of hope saved my life. Because of God’s grace, my doggedness, and the effectiveness of my medication, I am finally back on the road to recovery.
Know that you are NOT alone in your fight against a chronic condition. Accept your illness as a source of determination. At first, when I was sick, I felt like a failure, even though I knew it wasn’t my fault. At that moment, I let my physical self rule my mental one. The human mind is a potent instrument. When you’re at the bottom of a chasm of despair that seems to go on for ten thousand feet, it’s tempting to give in to the darkness and let it consume you.
Please remember that your mind can transform your suffering into a drive whenever you feel hopeless. Illness does not define you. It’s a part of your existence, but you’re more than just that. Although it may make you feel weak, there is strength and authenticity in showing your true self. In other words, it gives you a firm foundation. The things that matter most in life are brought to light. Your compassion for the chronically afflicted will grow as a result.
I’ve always been empathetic, but now I feel an especially strong connection to those who struggle daily with a debilitating illness. I have stopped wasting mental energy worrying about trivial matters. There has never been a time when the adage “don’t judge a book by its cover” was more appropriate. Some people may be suffering greatly even though there are no outward signs of their sickness. Being sick has made me more compassionate toward others who may be going through their struggles on the inside.
Having a chronic illness is a challenge, but it only makes us more resilient. Others of us who have to avoid symptom triggers have to go about life a little bit differently than those who don’t. When we wake up feeling crappy, we have to force ourselves to get out of bed. Although I don’t always have the greatest disposition, I always give it my all. We’ve had to develop our introspective skills to understand that this is something we’ll have to deal with permanently.
This may sound frightening, but it is not. It ought to fortify us if anything. We are now viewing life from a lot more realistic and practical vantage point than we ever could have otherwise. The allure of materialistic lifestyles has faded. Since becoming unwell, I’ve found myself drawn more to those that are honest, open, humble, and willing to put others before themselves to have a better understanding of their perspectives. When someone treats me or someone else badly, I no longer bother trying to help them. My emotional and mental reserves are depleted, and I have nothing left over to throw away.
If anything, your disease has made you stronger; keep that in mind when you feel like giving in to the notion that you are weak because of it. You have a vantage point from which others may never observe the world. No matter how hopeless or absorbed you feel, you are a fighter with all the talent and capabilities to keep going. You have a much deeper appreciation for the things that money can’t buy, such as the unconditional love of family and friends, the satisfaction of alleviating the pain of others, and the joy of everyday life.
When you feel like giving up and losing all hope, just remember that your inner fire is unquenchable. In this world, you can transform your suffering into something worthwhile. Even if you don’t feel like fighting, you have the fortitude to push through this difficult time. You are strong enough to drag yourself out of the depths. You need only reignite the fire within you, this time with even more trust and will, until your brightness illuminates a hitherto unnoticed horizon. You are cherished and capable of more than you give yourself credit for. Never give up.
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