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When Chronic Illness Makes Your World Feel Small

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Sometimes my life feels woefully small. And shrinking. Like everything in it exists in a bubble that, at times, starts to feel suffocating or claustrophobic.

Part of this is that I am a creature of habit and usually very change-avoidant. Not exactly a recipe for expanding horizons. And I’m afraid that recent health challenges have exacerbated my disdain for change.

I suffer from fibromyalgia and a host of other autoimmune- and inflammation-related conditions that, until now, have more or less behaved themselves if I eat well, get enough rest and listen to my body. If one thing flared up, I would typically have the luxury of resolving it (alone) before anything else would flare. These last few months? Not so. Multiple, recurring infections, upper respiratory problems, continuous, painful inflammation in my hip and surrounding muscles, unrelenting exhaustion, psoriatic reactions on my nails and face and stubborn stomach issues that I can only assume are related to IBS.  It’s been… overwhelming. Exhausting. Disheartening and depressing. Running from one medical appointment to the next in hopes of addressing just one thing to the point that I can focus on the others. Some things have calmed, and I’m grateful. But other things have not. I am a month into basically everything I eat resulting in horrible stomach pain and the frequent, embarrassing necessity of running for the bathroom on very short notice. It has altered my eating habits and my diet and, consequently, zapped me of any consistent level of energy. And as an added bonus, caused weight gain significant enough to shrink my wardrobe choices by more than half.

Now, not to worry – I will get through it. I have no choice but to get through it. And I’m doing as much due diligence as I can afford and praying that eventually things will settle. And so, the health problems themselves are not the point. But the fact that caring for them and attempting to address them and manage symptoms (since more than likely the exact cause(s) will remain elusive) has quite literally become a second job? That is the kick when I’m down, the insult to the injury. If I didn’t have the energy to expand my horizons, “put myself out there” or strike out into unfamiliar territory before, I most certainly do not have it now.

I say this with dismay, not defensiveness or resistance, although I will readily admit that getting out of my comfort zone is not my strength in the best of circumstances. But I can assure you that, right now, staying within the confines of the known and manageable is quite literally a matter of survival. They say that with chronic illness, you grieve for the life you had before or could’ve had, the You you once were or hoped to be; it is true. And that grief is never more frustrating than when you have the desire to do something more and different, but lack the physical, emotional and financial resources. (Yes, financial. Being chronically ill is appallingly expensive. Between the doctor’s visits, the testing, the meds, the alternative treatments and the work time lost thanks to all of the above, it very quickly soaks up a portion of my income that is downright horrifying. Still, I have no choice.)

All of that being said, I’m struggling to make peace with how very small, narrow and profoundly isolating my life feels right now.

Another would-be relationship has crashed and burned in a glorious blaze, and, once again, I’m left alone to ponder what it was about me that just wasn’t enough. Sure – intellectually, I know it’s far more complicated than that. It may, in fact, have very little to do with my shortcomings, and much more to do with his unresolved issues or the relationship being simply not meant-to-be. But boy, is it lonely. One more mangled piece of metal added to pile of emotional wreckage and failure that threatens to become a tower, blocking out the sun.

I want so much more out of life. And yet… I’ve found myself sitting in my car, head in my hands, wondering just how in the hell I’ve managed to muck up so. many. things. in my life. I’ve had a few good cries. I’m journaling and meditating and praying and desperately trying to stay busy. But I’m also exhausted and discouraged. On the upside of crushing, sleep-on-the-floor-under-your-desk-instead-of-having-lunch fatigue, I just don’t have the energy to allow for any more than minor emotional breakdowns and a few silent tears here and there.

Even as I attempt to process this now, I fear what I’m doing has been more of an extended complaint than a processing of emotional… stuff.

I have so many supportive people in my life, for whom I am extremely grateful, but at times I sense that they think I’m resistant to doing the things they feel would open my world, allow me to meet new people, and facilitate my experiencing new things. Truth is, I am resistant. But not out of stubbornness or entitlement. It’s because I find myself having to be increasingly more vigilant about how and where I expend my very limited supply of energy.

I don’t want to live life locked in a little box and alone. I crave connection, belonging, intimacy, love. At the moment, though, the best I can do is pray that the right opportunities, experiences and person will come.

Getty Image by xavigm

Originally published: May 26, 2018
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