How I Remain an Incurable Optimist, Even With Chronic Illness
I am an incurably optimistic person. That is who I am, my heart, my soul and how I eat, live and breathe. Sometimes though, life even gets to the best of us optimists and that’s OK. Sometimes you have to give yourself permission to simply absorb reality in its rawest form. Take your moment for all it’s worth, while also being careful not to overindulge in it. When it’s done, pick yourself back up and fight your way back to accepting what you cannot change, taking life one moment at a time, and begin truly believing, hoping and striving for a better life again.
As you might imagine, life with a chronic illness adds a bit of a challenge to staying optimistic. But you still can, and most importantly, you must! There is a reason why there is the phrase “the power of positivity” and that is because being positive truly does have power. Negative attitudes and feelings of helplessness and hopelessness can create chronic stress, which upsets the body’s hormone balance, depletes the brain chemicals required for happiness and damages the immune system. Chronic stress can actually decrease our lifespan. This is why keeping an optimistic perspective prevalent in your life if you are chronically ill, or taking care of someone who is chronically ill, is so very important.
How do you do it though, especially when the pain just never subsides or goes away? Well, here’s a bit of my experience with it. I have a chronic illness. More specifically, I have myalgic encephalomyelitis, also known as ME. It’s a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. ME leaves you exhausted beyond your wildest dreams and showers down on you an ever-rotating array of symptoms – light, sound and temperature sensitivity, nausea, sore throats, swollen glands, back pain, short-term memory loss… and the list goes on. The best way to learn the true depths of the disease is to watch the amazing award-winning film by Jennifer Brea, “Unrest.” It was released October 10th and is taking the world by storm. It is a documentary film medical mystery love story that courageously shares how Jennifer Brea faces head on her myalgic encephalomyelitis condition.
I can tell you firsthand that life with a chronic illness, one that leaves you homebound for days on end, literally doing nothing more than just existing as life goes on around you. is one of the saddest realities of having a chronic condition. It’s lonely, exhausting and isolating. It’s painful, heartbreaking and the grieving process – it just never ends. The pain changes you. It breaks you again and again and leaves the most hopeful feeling hopeless. There are no days off, no break to regroup and come back stronger, no time to relight the candle of hope that gets blown out again and again. On bad days, hope just vanishes into the night.
If you are one of us who has a relatively unknown condition (notably though, ME affects over 17 million people!), you may go years before being properly diagnosed. This means costly doctor appointments, sitting in waiting rooms for hours and trying medication after medication and dealing with their side effects, which may only add to your pain. For me, finding a doctor who knows about my condition is near impossible. In many states there are no doctors who specialize in (or have heard of!) ME. This makes trips to the doctor’s office terribly exhausting. Having to explain to each doctor you go to exactly what ME is is exhausting and certainly not confidence-inducing.
To add to that, if you have an “invisible chronic illness” (i.e. while you look fine, your pain is attacking you inside from all angles), you face yet a bigger challenge. The validity of your illness gets second-guessed by your friends, your employer and for some, even their family. Imagine living in debilitating pain daily and then on top of that having to prove it. Isn’t your daily fight enough of a battle?? Speaking for myself, my plate is full. Full!! It’s enough for me to put on this fake smile when I go out in public because showing you how I really feel just isn’t acceptable. But don’t then also make me explain why on my few “public” appearances I look OK.
So yes, I have a chronic, incurable illness. However, I have also told you I am an incurable optimist. I use my precious bits of energy to wiggle through the tangle of weeds to find the spots of light in this all. And there is some light, even some new light. I’ve found I can’t worry about what I can’t remember (sometimes a little memory loss can be a gift). I’ve been forced to slow down my type A personality and through that have discovered yoga and meditation are the path to inner peace for me. Let me be the first to say that was a tough pill for me to swallow. Battling it out at the gym and working up a hardcore sweat was my vice. A vice that has since been swiped from my life. Now at 45 I do chair yoga with seniors. And that’s OK! My parents have gone from amazing parents and friends to my heroes – supporting me every step of the way in unimaginable ways. And I’ve learned to live the old adage of “don’t sweat the small stuff.” I either can’t remember the small stuff anymore or I don’t have the energy to care about it.
Perhaps though what hit me the most at first was that I felt like I lost me to ME. And I did. I have always thought I would continue to enhance my skills and talents in life, not go backward with some of them. However, the optimist in me reminds me there’s always two sides to every coin. I asked myself, how many times have each one of us wished we could just start over? Or recreate ourselves? As a career and personal coach, I hear this all the time from my clients. I realized I have the unique opportunity to start from scratch in just about every aspect of my life and redefine who I want to be. How many people get that opportunity? How lucky am I!
I am incurable in every way. I have an incurable condition… for now at least. Yet I also am an incurable optimist. And that is something that will never change, no matter what life throws at me. Having a disability doesn’t mean you can’t still succeed and live out your dreams. It just means that sometimes it takes a little more creativity!
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