What I’ve Learned from Living with Chronic Illness

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Antibiotics are chemotherapy. The word antibiotic means anti life. I have to take some antibiotics right now, and the side-effects are really heavy. I’m feeling very low and drained. But I think it’s the right decision, because I have prostatitis which is related to my fibromyalgia/chronic fatigue immune dysfunction syndrome (CFIDS). I usually just kind of live with it and focus on the positive to not lose my personal power, but right now, the bombs have to be dropped to see if it helps. It sucks, but I’ll get through it.

Honestly, I’ve been thinking pretty heavily about my chronic illness. When I first got sick in my early twenties, I got a lot of resistance from the medical establishment and loved ones. I learned to sort of put it in my private life and not really share it. It’s a very difficult psychological balance to live in a fast world with a “hidden” disability. Our medical tests at present are very poor with detecting what’s going on in lots of chronically ill people, so often the medical establishment just defaults to the “it’s all in your head, take an anti-depressant, and deal with it” approach.

I deal with a ton of symptoms including: cognitive impairment, confusion, deep muscle and joint pain, intense fatigue, depression, anxiety, sensitivity, insomnia, and others. They seem to follow a very irregular pattern and always pop up at the seemingly worst time. It’s something I’ve had to shoulder silently for decades now, and I did reach a point two years ago where I was completely overwhelmed with my health and various other difficulties. But I reached my bottom, and I gave up. I acknowledged my powerlessness, and said “OK, I don’t have control of this situation, but I’m going to keep climbing no matter what. I’m listening and open to learning.”

Dealing with chronic health issues is a very complicated thing because often the best drug is optimism. When you have a poor self-image, a victim mentality, and a “the world is all against me” thought process, it can make you sick. I honestly believe, and the data backs this up, that a lot of my chronic health issues are due to a childhood of trauma and disempowerment. That’s not to say that there are not real, material things at work in my body, but the two factors go together.

My diseases and queerness and losing my children and everything else really broke me, and now I’m happier or more at peace. I don’t care about small things. I’m human, and they bother me, but I soldier on with an understanding that life is pain. I feel disabled in some way, and I have to do a complex set of daily adaptations to handle my various disablements, but that’s ok.

So, I’ve decided that my five year plan is to go back to school to get a Masters in Counseling in some capacity with a focus on the Psychology of Chronic Illness and start working in that field. I think I can help others find balance in a very confusing and overwhelming circumstance, and I feel a real calling to do so. Ultimately, I want to work outside of the medical establishment and integrate my alternative beliefs like the power of ritual and empathic therapy into my practice. But I need the paper to be a “real therapist.” 

There are often not any easy solutions in situations like mine. There is just work and balance. Maybe providence will smile on me, but it’s ok if it doesn’t. I know what it’s like to feel crucified here on Earth, and there is transcendence in letting go and accepting our limitations. There is a tarot card that keeps popping up for me lately: The Hanged Man. In most decks it shows a man hanging upside down, completely suspended and powerless. He has lost all of his earthly power, but in so doing, he sees the world upside down, and he has total spiritual clarity. Life picks us up and turns our lives upside down, and although I’ve seen great loss, pain, and trauma, I’ve grown to see divinity and feel a joy that never dies, even in extreme darkness.

2 comments on “What I’ve Learned from Living with Chronic Illness”

  1. Hi Abbey
    This was really inspiring for me. I have a number of the same medical issues and there are whole weeks that seem overwhelmingly challenging. Your instincts are very sound and the direction to take a degree in therapy to specialize in chronic illness is a mastery in itself–to add to your writing. I so admire your strength and output as a literatist. Keep going.
    Love from Jodi

    Liked by 1 person

    1. Thank you Jodi. I appreciate your words. Some days are better than others. I wish you luck in your journey through this Earth. You told me once “Earth is a tough school” and I haven’t forgotten that.

      Like

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