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Chronic Snarkopolist: Is There Such a Thing as Getting Illness Right?

Post Published: 29 June 2011
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 2 responses. Leave a comment

Hello my loves!

One thing I have noticed about healing is how we construct our illness stories and share them with each other.  Some of us have healed a great deal and some of us are still figuring it all out.  And, as usual, because health comes in waves and setbacks and it is attached to our emotions too.  Once we’ve conquered the bigger deals like survival, then we often work on our emotional life and mental health. Meanwhile, feeling crazy during illness is pretty par for the course.

Looking back on my history as a patient, there are mistakes I made that I find entirely laughable now.  There are things I did and said that I would never do now.  And, sometimes I hear newly diagnosed patients saying and doing such things or I hear doctors and nurses feeling frustrated by patients who say and do such things.  And I think, “I’ve done that, there is hope for them, they just need to learn how to navigate this snarl of a mess of illness and loss of control.”  No one is exempt from being a little crazy now and again. It is easy to forget when life is smooth sailing.

One beautiful woman wrote powerfully about never being given the option of having no treatment at all after being diagnosed with cancer.  She wrote about feeling tired and run down yet feeling as though her doctors all believe that treating her cancer is the only viable and acceptable treatment.  She feels a loss of control in her life. Having no options feels wrong.

I heard another conversation between doctors talking about “selling medical treatments” and feeling guilty about “pushing treatments” (even gently pushing) on patients when they know they are necessary.  How clashing to hear these two stories juxtaposed.  Of course these doctors probably never consider telling their patients about the implications of not treating diseases. They want their patients to get well!  Meanwhile, few doctors, unless they have family actively dealing with it, can truly understand the emotional and physical impact of actively going through treatment. Yes, they understand disease very well, they have a doctoral degree in it. But few understand the process of going through the treatment of disease. And that is where many disconnects between patient and doctor occur.

And caretakers are rarely involved in the conversation at all. They too get thrown information and informed about an illness. They get handed caretaking responsibilities and also have to deal with personality changes and schedule changes and heavier workloads. One woman holding down a fulltime job as an attorney and dealing with her mother’s treatments and support said to me, “I sometimes hate my mother for her cancer.”  No one tells caretakers they will have emotional reactions to not only an unfair disease but sometimes resentments to people who are ill.

Emotions are ok to feel as long as we are not actively abusive with our feelings! It is the guilt from the emotions or the damage we do with unprocessed emotions that harm us. And unless a caretaker has done this before with a close loved one, no one tells them this! So everyone is navigating all these new roads and learning and re-learning who they are and where they stand.  Sometimes people who were in charge before have to take a back seat to illness, they have to stop spending time with their kids, give up jobs, give up hobbies. Of course we make mistakes!

What do you think? Is there such a thing as getting it right? Can we help others with our stories? Can we help others with our process? Can doctors and patients help each other to ease the path for each other? What is healing all about? Is healing entirely personal or is there a community aspect as well? Please tell me! I must know!

I will see you same time next week! Kiss kiss!

-Melissa

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2 Responses to “Chronic Snarkopolist: Is There Such a Thing as Getting Illness Right?”

  1. ria says:

    Hi Melissa,
    Great read your post!
    I don’t think there’s a right/wrong, there’s the patient’s way?
    I did it ‘my way’ (lol) twice, thyroid&breast, thyroid residue still lingering. I recognized myself as ‘Ria, going through cancer’ the second time around. I did the same things for coping, and encountered the same pitfalls. To me, it’s about being mild with myself, learning to get comfortable with ‘The Great Not Knowing’ and( patient(pun!)with what inner fearful turmoil may rage, after all, that too shall pass, even if not the way we want.
    For sure there is a personal and a community aspect to healing. Compassion is a helpful attitude, active&open listening to patients sharpens awareness for people’s processes while going through treatment trajectories and crises, sharing stories helps. Recognition of feelings and preoccupations help. Someone who’s gone before, even if it’s not the exact same path has a ‘wounded healer’ quality in my opinion. We may have to do the struggle for ourselves, such is Life, but it helps to see some beacons, even if we don’t land on its shore. Beacons help to find our own way?

  2. Jody Schoger says:

    Dearest Snit,

    Keep on, keeping on. This is a terrific post. It reminds us that in illness our perspective feels like the whole world but is just one aspect of an entire picture. The most important thing any of us can say to a friend newly diagnosed with ANYTHING is, “sit still for moment. There’s much to wade through.”

    First you need to understand yourself, your own reactions to illness and your definitions of limits; then the perspective of your caretakers and yes, I completely agree, understanding where your physician is coming from – and whether or not you can work with him/her is essential.

    Sometimes empowering ourselves with both compassion AND intelligence makes it harder. Hearing from others is key. We heal in community. We don’t heal, alone, adrift on an island. It just doesn’t work that way, even if we are alone…full well knowing there’s someone in the other room:)

    A lovely post, thank you:)

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