Impaired, But Not Helpless

Ambition is when you expect yourself to close the gap between what you have and what you want.

Entitlement in when you expect others to close the gap between what you have and what you want.

James Clear

It took me about three years of being sick to acknowledge that something was wrong. From that point of acceptance, it took another four years to receive diagnosis beyond X or Y syndrome. A syndrome is a symptom, not a diagnosis, but it was the best I could garner.

About six years into my illness, I was diagnosed with finally diagnosed with a more systemic syndrome — chronic fatigue syndrome (CFS). After conducting an internet search and discovering numerous forums, I was suddenly grateful it had taken me so long to stumble into a more comprehensive sort-of-diagnosis.

Most of the forums were filled with pessimism, hopelessness, and self-pity. I’m not discounting those experiences, by any means. CFS is a disease that fully warrants the grieving I witnessed so many going through. In fact, prior to diagnoses, I experienced grief when my friends abandoned me and when I was no longer able to engage in my favorite hobbies. Those who have developed CFS years after cancer have stated that CFS is much worse. Imagine the sickest you’ve ever been and multiply that by ten. It really is that bad. The individuals in those forums are not exaggerating.

Though I grieved, I didn’t linger there longer than necessary. I didn’t have a diagnosis so, in my mind, I didn’t have an excuse. Whatever was going on in my body, it was my responsibly to figure it out and fix it.

As much as I grieve for the lost years, I’m glad that it took so long to receive a label. I’m grateful that I didn’t fall into the well of victim mentality and become trapped there.

Yes, I was a victim, as is everyone else plagued with a debilitating chronic illness. And yet, that isn’t a reason to give up our power over the situation. It’s tricky, because with no energy, no social support, and no clarity, it’s near-impossible to feel empowered in the situation. And it’s not fair to ask those in the position of no energy, no support, and no clarity to have faith in their future. They are in a tougher position than most could fathom. CFS is a lonely and torturous hell.

The quote for James Clear brought some clarity to my thoughts on the topic of self-accountability in chronic illness, which is quite touchy.

“Ambition is when you expect yourself to close the gap between what you have and what you want. Entitlement in when you expect others to close the gap between what you have and what you want.”

Each of us, at any given time, have a gap between what we have and what we want. The gap looks vastly different between a sick and well person and, at least in my experience, the gap of desire is extremely narrow when ill. It’s no longer a gaping canyon from minimum wage barista to best-selling author, but instead the seemly chasmic abyss between being lacking the strength to lift a hairbrush and managing one stoke down your scalp. At one point in time, that was my greatest dream in life.

Ambition is defined as an eager or strong desire to achieve something. When that “something” is better health, ambition may involve being willing to research, experiment, and discover how to bridge that gap. The time and effort will be much greater for a much smaller payout, but there is fulfillment in self-advocacy. There is joy in the microscopic improvements.

I’m not here to criticize entitlement or even victimhood. Yes, doctors should be better listeners, should keep up on the latest research, and should take patients seriously. Friends and family should be understanding and supportive. In a perfect world, those in need to social welfare support would be receive the help that they need. But we don’t live in a perfect world and reality is not always kind. We can hope that others will close the gap between what we have and what we want, but to expect that would be foolish. I don’t know about you, but I’ve learned the hard way that people often disappoint us.

I’m a big advocate for accountability and responsibility for one’s self. Chronic illness, admittedly, throws a huge wrench into that machine. I get frustrated seeing others’ frustration. We’re impaired, but not helpless. I’ve been wondering for some time how to say that without coming across as insensitive. I know what it feels like to be told I’m not trying hard enough when I’m giving it everything I’ve got. I don’t want to be that person that suggests you’re not doing enough. Surely, you are.

I think the best framework for approaching ambition in the context of chronic illness is this: identify where you are and what you want, and then determine the baby steps that may help you reach your final destination. Try, fail, persist. One step at a time. Just keep going. Look for the little victories and celebrate the smallest wins.

I first fell ill in March 2015. It’s taken eight years of slow and steady trial and error, during which I’ve gradually improved my health. Now, all of those itty-bitty achievements have brought me to the cusp of total and complete recovery. We all have that power. We really do.

It’s not your fault that you’re ill, but you can take responsibility for turning the ship around and aiming toward the shores of wellness.