Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts

Saturday, June 20, 2009

Sense and Sensibility -- and Courage

People who fight any sort of condition -- which is most people nowadays -- have to reside deep in their hearts to find that all-too-rare commodity: courage. Those with medical afflictions have to find the best advocates: ourselves.


My postings have focused on how to navigate the medical system, which is a never-ending gauntlet of doctors and medical tests. This posting is about following your senses to know which family members and friends to "fire" if the relationship is not worth saving, as well as the courage to deal with those who lack sensibility, or empathy.

For me, living through the breast cancer experience had been such an enormously challenging undertaking that I would find myself crying in the car, sobbing in the bathroom, and bleary eyed half the time, but all the while, I knew that deep down inside, I had carte blanche to rely on the best advocate in the world: myself.


As difficult as it is to listen to doctors who won't listen to us, it is much harder when the people who won't listen to you are closer to your heart. I'm speaking about people who are supposed to love us -- family and friends -- but they abandon or reject us during our time of greatest need. These individuals' lack of sensibility hurts us more than they know, or care to know.

When I was diagnosed with cancer and started making those dreaded phone calls, most of my friends and family were very supportive and had great empathy.

For this, I will always be grateful.

But the "C" word is so overwhelming to some, that the pain of a friend or family member rejecting me was too much to bear. One so-called friend told me he was "honored that I felt I could confide in him," and then I didn't hear from him for four months. Family who I thought would come to my aid instead refused to call me or denied my symptoms.


Equally distressing are those who stay in touch with us on our journey but out of touch with our basic needs. These individuals choose denial over the truth, in short minimize our suffering instead of acknowledging our voices of pain and anger and grief. This decision isn't out of malice; instead, it based on pure selfishness -- so they don't have to deal with the emotional and physical "mess" that comes with illness.

And as anyone with a serious ailment knows, illness is messy -- physically, emotionally, and psychologically. And, unfortunately, many people don't want to deal with the mess. Instead, they like to put things into nice, tight little packages, where they do not have to deal with the pain of their loved ones.

I'll give a few examples:

**One relative called one of my surgeries a "procedure," instead of what it actually was: surgery.

**One "friend" used my vulnerability to try to convert me to her religion. (Didn't work, so sorry.)

**Other relatives refused to call me, talk to me, or visit me. I had become somewhat of a medical pariah.

**A few people would allow me to spend hours in the hospital waiting for them to finally show up. They threw me a bone by doing some things around the house to "help" me. When I expressed my anger at having to wait for them so long to visit, they essentially said I was ungrateful.

**To this day, when I talk to a couple of family members, they do not acknowledge the cancer. One person said, "You are OVER it," while another can't even say or listen to the word "cancer." For this latter individual, all I can say is the following: "cancer, cancer, cancer, cancer, cancer."

A two-syllable word that rolls easily over the tongue, but is so difficult to digest.

This is why being your own self-advocate is so important. If a person believes that such toxic individuals will lift him or her up, then he/she is the one in denial.

It's time to call the shots in how we live our lives, and that means surrounding ourselves with supportive individuals, being supportive people ourselves, and confronting/firing those so-called well-meaning individuals who deny the very essence of our conditions.

It takes courage to do so, but then again, fighting an illness does, too.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices'>http://www.amazon.com/Voices-Breast-Cancer-Companion-Strength/dp/1934184020/ref=sr_1_1?ie=UTF8&s=books&qid=1242657371&sr=1-1">Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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Thursday, April 9, 2009

The Gateway Doctor

My grandmother always told me, "If you have your health, you have everything." As a child, I didn't understand the truth in these words. I didn't heed these words as a healthy young adult: I came from very genetically healthy stock -- people in my family die of old age for goodness sakes, even the ones exposed to asbestos, lead, and various other toxins!

I didn't heed my grandma's words until I was diagnosed with breast cancer. Because let's face it: I, as so many people, took my health for granted -- until I didn't have it.

Now I'm going to spin my grandma's words to suit my medical-advocacy purpose: "If you have a great gateway doctor, you have everything."

Besides you, the most important person managing your health care is the "gateway doctor," also known as the primary care physician, internist, general family doctor, etc. Whether or not you are healthy, whether or not your family has had the same physician they have felt comfortable with for decades, whether or not your doctor is well-versed in all of the new medical technologies, whether or not your doctor has had an established practice with a good reputation, it all boils down to this:

Do you trust your family doctor with your life?

If the answer is anything but a resounding, enthusiastic "YES!," find another doctor immediately. Your life is too precious to take a chance with incompetence and mediocrity.

I measure competent doctors by their medical and emotional know-how. They must be medically competent (sounds like I'm stating the obvious, but it needs to be stated) and they must have your best interest at heart. The latter point means more than just bedside manner: I have had doctors be pleasant to me during an examination, but mere pleasantries are not enough.

You must LOVE your doctor.

As is the case with specialists, the ideal gateway doctor cares about you as a patient and will work as hard as possible to advocate for you. Another perk is that a great family-practice physician tends to keep company with other excellent doctors -- and that opens the gateway to outstanding medical care.

I was lucky to have an outstanding gateway doctor in place before I got diagnosed with breast cancer. She was my physician for years because we had great patient-doctor chemistry.

Let me tell you what she did for me during my breast cancer journey:

She called me often, coaching me through the diagnosis and prognosis. She listened to me, and validated my concerns. She encouraged questions and provided prompt answers. She returned my phone calls, often on the same day that I left her a message. And she was working behind the scenes and putting an excellent team in place for me. She landed a great surgeon, steered me toward a fantastic medical oncologist and radiation oncologist. These top-level professionals all worked tirelessly to save my life, but they didn't treat me as if I were a mere patient.

They treated me like family.

And they were all HMO doctors.

(In a future blog, I will dispel the myth that all HMO doctors are bad.)

And even though I had a medical team of specialists who were unbelievably outstanding and kind -- like off-the-charts brilliant and sweet people -- I probably wouldn't have crossed paths with them, had it not been for my gateway doctor, whom I have called my guardian angel.

So now that I've waxed poetic about my gateway doctor, here are some litmus tests that can help you find the doctor that's right for you. These tests also apply to specialists, but you need a great PCP in place before you can even consider a specialist.

You'll need to set up a routine exam, perhaps with several doctors, to find the right one so please be patient.

Litmus test one: During your meeting, give an emotional prompt, like: “I’m afraid of blood tests.” Observe the doctor’s reactions. Is he/she emotionally vested in you? Reassuring? If not, find another doctor.

Litmus test two: Sometime in the week following your exam, call the doctor to ask a question. Does the doctor call you back promptly? Does he or she communicate with you clearly and patiently? Does he or she take your concerns seriously? If the answer to any of these is “no,” find another doctor.

Litmus test three: Based on litmus tests one and two, do you LOVE your doctor? If you are feeling badly about him/her or just so-so, find another doctor. Don’t settle for mediocrity because if there were a medical crisis, a doctor you love and who cares deeply about your welfare will be the one who fights for you.

Litmus test four: Does the doctor play “ring around the patient,” where he/she continuously throws statistics to impress you with his or her know-how? Does he/she come with print-outs of pages from the Internet to illustrate these statistics? Do you feel confused during and/or after the session?

Run – do not walk – away from this doctor.

Litmus test five: Does the doctor use scare tactics, telling you all the terrible things that can happen to you? Is he/she dismissive of your emotional and physical needs? Does he or she sound like a doctor who has watched too many ER or Grey's Anatomy episodes? If so, this is not the doctor for you.

All in all, trust your instincts and be persistent in your goals to find a great doctor. You will know whether a doctor is a good fit for you. Also, if you suspect something is wrong and a doctor does not give you a satisfactory answer or solution, then continue advocating for yourself. Don’t accept answers like, “You are too young to get cancer.”

Demand to be treated with respect and, if need be, be difficult to those who treat you unfairly. You have an amazing power to demand to be treated with respect – whether from doctors, nurses, and office personnel. If someone treats you with disrespect, such as rudeness, talk back.

You are nobody’s doormat, and they need to know it.

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