By Ilana Jacqueline
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 they have the solution for patients who are straddling the line between hope and desperation. And, make no mistake, chronically ill patients are always straddling that line.
I used to think it was something only "alternative" doctors such as acupuncturists, chiropractors and medical intuitives did. But, as life with a complex condition drags on, I realize 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 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 motives are - good, bad or 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 he or she should be reaching out to different researchers. Your doctor should be enrolling you in clinical trials and research studies, and using the latest technology to learn more about you and your options. And, your doctor should be clear with you where he or she is in the process.
If your doctor isn't doing that, or if he or she is telling you to just "hang in there" without giving you details about 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, evaluating the success of it and demanding to be a part of the decision-making process. You can't dangle false hope in front of someone who is involved in his or her 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 if the answers are out there for me in this lifetime. Will they cure dysautonomia or primary immunodeficiency disease before I die? Maybe. But they didn't figure it out in time for me to graduate high school, work for my first job, 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 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 when I would have taken kind words and compassion from my doctors. When 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 until you find the help you need.
Reprinted by permission from www.letsfeelbetter.com