Dangling: Don’t Settle for False Hope in Treatment

I want to talk about the act of “dangling.”

This is what I call the acute, near-tangible action of hanging a cure, discovery or treatment option over a sick, undiagnosed or suffering patient’s head.

And it’s happened to me too many times to count.

This is an act performed by people who claim that they have the solution for patients who are straddling the line between hope and desperation.

And make no mistake, the chronically ill patient is always straddling that line.

I used to think it was something that only “alternative” doctors did. Acupuncturists, chiropractors, medical intuitives—but as life with a complex condition drags on, I realize that even some of the top doctors and researchers in their field are guilty of dangling.

I try to give them the benefit of the doubt. I work in the research industry now. I know how very thin the line is between a theory and a workable idea. I know how advanced technology is. I know the brick walls that separate patients from available treatment options.

The real problem with “dangling” is that the patient is always getting a half-truth. I could give you a thousand reasons we’re not getting the full picture.

  • they want us to pay for longer, more lucrative treatment options…
  • they don’t want to deal with the caseload of a complex patient…
  • they don’t want to reach out to superior colleagues and admit ignorance…

But this is the truth: Whatever their motive is, good—bad—completely indifferent— They believe, on some level, they can keep us hanging on until they figure it out.

Here is my truth: I can’t wait for them to figure it out.

My life is precious. Every moment is precious. Every moment spent in pain, on medication, in surgeries, playing Guinea pig to a doctor without the resources to make things happen is a moment wasted.

If your doctor doesn’t know the answer then they should be reaching out to different researchers. They should be enrolling you in clinical trials, in research studies, using the latest technology to keep learning more about you and your options. They should be clear with you where they are in the process.

If they aren’t doing that. If they’re telling you to just “hang in there” without giving you details on what you’re “hanging in there” for—you’re being dangled. 

I won’t be a victim to dangling. I won’t be a victim because I’m constantly demanding to know the status of my treatment plan, constantly evaluating the success of it, and constantly demanding to be a part of the decision making process. You can’t dangle false-hope in front of someone who is involved in their medical decisions on that level. 

I have to keep moving, take the best cues and insights from the doctors I’ve seen and build my case.

I don’t know that the answers are out there for me in this lifetime. Will they cure Dysautonomia or Primary Immune Deficiency before I die?

Maybe.

  • But they didn’t figure it out in time for me to graduate high school.
  • Or work for my first job.
  • Or build my first business.
  • Get married.
  • Or try to start a family.

It’s a weird situation to always be straddling the line between hope and desperation. Between respecting your physicians and researchers and wishing on them the ability to REALLY feel the pain and urgency behind what it is they’re working on.

To always be moving forward objectively and trying to decide if your team is managing your disease—or just your expectations.

There was a time where I would have taken kind words and compassion from my doctors. Where I would have appreciated a hand on my shoulder and the words, “you’re going to feel better soon” with complete blindness and faith.

But those words mean absolutely nothing if the intention to make that a reality isn’t behind them.

Don’t be dangled by false hope.

If it’s hanging on a string above you, step on every pile of garbage you can to reach up and grab it like a rope—then keep climbing till you find the help you need.

 

 

 

Keep learning more about advocating for your best care:

 

Comments

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14 thoughts on “Dangling: Don’t Settle for False Hope in Treatment

  1. Carrol Lindsay

    I was not feeling well so I missed going to church this morning. My body was tired I disn’t get up 1:30 pm My body was telling me your body ned’s to slow down. The Balancing Act came and I heard about you your blog and the book dealing with rare diseases. It waaadelight to hear your story. I’ve ordered the book. I learn lTe last year Igave rare disease in my medical record the doctor never discuss or told me. So I’ m in my journey now learning about CGD a herltary disease. And whenever I had pain the usual response was it’s arthritis or rheumatoid arthritis or I was faking my pain. Thanks for starting the conversation and shining some light.
    Carrol
    carrollinssay2016@ gmail.com

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