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.

18 thoughts on “Impaired, But Not Helpless

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  1. I agree with you 💯. I went through chronic Shingles for 10 years and the pain kept me from sleeping. Sleep deprivation and pain aren’t a good combination, but getting other people to understand seemed to be mission impossible.

    I learned that help and healing weren’t going to come through a doctor or anyone else, that if I wanted improvement I would have to find it myself.

    Doing research to find out how to improve one’s immune system is step 1. Next is putting those things into practice. The upward healing process is very slow and sometimes hard to see, but every thing that we do for ourselves adds incrementally to our progress.

    Once we heal, health maintenance then becomes a priority to help prevent relapses.

    Liked by 3 people

    1. I suspected you might be able to relate, Tamara. 😊

      You state it so eloquently: “The upward healing process is very slow and sometimes hard to see, but every thing that we do for ourselves adds incrementally to our progress.” Yes, yes, yes!! Healing really is a journey–a hard, but invaluable one.

      Liked by 1 person

      1. I think because the process is so slow and imperceptible for quite a while, people give up on it. The trick is to trust the process and just keep going!

        Liked by 1 person

  2. Erin, sadly, you are so right that we don’t live in a perfect world. And, sadly, although somehow, undoubtedly due to your own strength of character, you have managed to find a way forward through 8 years of this nightmare not at all of your making, there are many people who just wouldn’t have the inner fortitude to find that way forward. We really don’t live in a perfect world. 😥

    Liked by 1 person

    1. As much as things things have been nightmarish, I’m grateful that enough things have gone right to bring me to this point, which is hopefully the cusp of healing.

      I see so many posting online who don’t have the fortitude to find a way forward, and my heart aches for them because it’s not so much weakness of character and just an overwhelming exhaustion and sense of hopelessness. I never imagined I would be ill for so long… I just had to focus on the task at hand and the immediate future, one day at a time. I just wanted things on the other side of the fence badly enough to keep going (e.g., resuming hiking and yoga, starting a family). It’s not easy though, and I understand why people give up.

      Liked by 1 person

  3. Hi Erin, I think you’ve done a wonderful job discussing the somewhat fragile balance between feeling helpless and feeling like we have some control over our hopeful journey to better health. When I was first and finally diagnosed with Lyme disease after 4+ years and a multitude of different doctor visits, I spent quite a bit of time researching and spending time in groups, forums, etc. trying to find connections to others who could understand as well as learning more about Lyme disease. But, at some point, I had to say goodbye to that stage of my journey for many reasons. Have I regained my pre-2011 health. Nope. Do I still struggle now with CFS and other auto immune issues most likely triggered by untreated Lyme? Yep. But I agree with you that setting and taking steps forward, even if miniscule, is important. It has taken me some time to get to this place. And definitely at times, it’s easy to lose my footing. But like you say and I love this: “One step at a time. Just keep going. Look for the little victories and celebrate the smallest wins.” Let’s keep taking that one step forward, my friend! ❤️

    Liked by 2 people

    1. Thank you, my friend, for your comment and for sharing a sliver of your journey! I feel better hearing from someone who understand that I’ve struck the right balance here. Those baby steps really are the difference between hope and hopelessness, aren’t they? The tiniest victories are often just the nudge we need to keep going. Yes, one step at a time! ❤️

      Liked by 1 person

  4. My dad wrote his dissertation on faith healing and it was fascinating to talk with him from a different angle of this topic that you’ve written about so beautifully. As you said – it is so tricky. Speaking of the faith healing angle, my dad often said that we don’t want people to feel as if it’s their fault because if they had enough faith they’d be healed. On the other side, faith can have great benefit to healing.

    You seem to have found that elegant balance in both writing about and living your illness – it’s not your responsibility but you can take responsibility. Amazing! Here’s to the next step of in your journey of recovery! ❤ ❤ ❤

    Liked by 1 person

    1. Your dad sounds like he was such a wise man. I love that, even as a pastor steeped in his own faith, he could recognize the guilt one might feel for “not having enough faith” and approach the topic gently. It’s certainly been a learning process for me to find that balance, but it’s been worth the effort. Thank you, thank you, thank you, Wynne!! ❤️❤️❤️

      Liked by 1 person

  5. As always, you speak from the heart. What you say completely resonates with me. I run a support group on Facebook for people with ME/cfs, and I really feel for those who seem to have given in to it. It is so easy to let the fatigue and exhaustion (and the fear!) stop you from looking for a way forward. I will never stop looking for answers.

    Liked by 1 person

    1. I completely understand, Susan. It would be easy to become discouraged and give up. I look at my own story and it’s taken over years of constant experimentation to gradually improve… but each time I ruled out a diagnosis or treatment, I interpreted it as creeping closer to the truth rather than as failure. I think that distinction is vital for hoping onto hope. I hope you find your answers, Susan! I hope that we all do. ❤️

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  6. You have a great attitude, Erin. I have tremendous empathy and compassion for those who fall ill and experience sickness, having seen my mom suffer a stroke three years ago and still recovering and my sisters recent and lost battle with cancer. Attitude really makes a difference in closing the gap – as does, good healthcare supports and familial and friendship support, which I don’t discount.

    It’s so nice that you are closer to full recovery. I can’t imagine what you went through but I can imagine from afar how amazing that feeling of finally must feel. Good luck!!!

    Liked by 1 person

    1. Thank you, Ab. I’m so sorry about your mom and sister. Illness and death, no matter how many times we’re faced with them, are never easy. You’re absolutely right that a good attitude and strong support system make such a difference.

      It really does feel amazing to have finally found some answers, and I’m hopefully that I’m right on the cusp of a full recovery! Thank you!!

      P.S. Unsolicited idea for your mom: I’m currently on Prodrome Sciences plasmalogen supplements for Alzheimer’s, but it’s helpful for all neurological disorders, including recovery from stroke. It’s helped my cognition tremendously over the last ~2 years. The researcher/developer, Dayan Goodenowe, PhD has many free lecture/overview videos you might check out. Supplement is $100-200/mo, so a little pricey, but may be worth looking into or talking to a doctor about.

      Liked by 1 person

      1. Thanks Erin. That’s very interesting about the plasmalogen supplements. I will have to take a look!

        Like

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