Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Emotional Health, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Truth Be Told

We teach children to tell the truth.  We take an oath to tell the truth when we get on the witness stand.  When we watch Superman, we hear “Truth, Justice, and the American Way”.  We’re caught up in the premise of truth and yet when we go to the doctor, we often hold back telling the truth.

Let me be clear, omission of facts (data) is not living your truth.  Minimization dilutes truth!  Trying to be or act the way our provider expects us to be/do diminishes our truth.

This is what I’ve learned after being a patient advocate for over twenty years.  If you don’t tell the truth, the raw, nitty gritty details, your healthcare provider is working with insufficient data.  If you don’t give your provider all the information, it’s like leaving ingredients out of a recipe…what a disaster.

Truth is a two-way street. If you aren’t honest with yourself, how can you be honest with your provider?  If you’re having a flare, don’t just believe it’s a passing thing and doesn’t need attention.  If you’re in pain, don’t dumb down the number on the 1-10 scale so the provider thinks you’re brave and can handle the pain with minimal intervention.  The opioid crisis is predicated on a lack of truth, making providers hesitant to prescribe narcotics for pain.

Truth is a funny thing because many believe it works on a sliding scale.  I want you to ponder the idea of truth on a sliding scale when it comes to your health and well-being.  I’ll give you an example.

One of the times I went to therapy, I was seeing a Jungian analyst.  He was a highly competent psychologist and I liked him a lot.  I trusted him.  After eighteen months of seeing him I walked into my session and initiated termination because I felt “healed”.  He was persistent in asking me if I truly believed what I was saying.  I’m stubborn!  I left therapy, telling myself I was healed.  Nine months later I was driving and pulled into a gas station to use a pay phone (I’m dating myself) and called him.  He answered, the first words out of my mouth were, “I need an appointment, I’m crazy” (not in the clinical sense, in my personal experience of how my life was going.)

I learned a lot about truth telling from that experience.  I learned that telling the truth didn’t diminish my worthiness or my life in my therapist’s opinion.  By telling my truth, I healed more quickly.  Best outcome was I felt lighter walking in my own shoes.

I encourage the patients I advocate for to be honest with their providers.  There’s a caveat here, sometimes patients feel they are telling the truth because they don’t remember/recall the complaints they’ve had between appointments.  It’s interesting that we believe an episode or experience isn’t important to tell the provider.  Every aspect of your health experience is important to the provider.

What’s the first truth you’ll tell?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Still on the Journey…With Renewed Passion

I’ve been working in the healthcare field for over thirty years.  I’m a mental health provider, focused on the impact illness has on our physical, emotional, and spiritual lives.  When I started this blog, my intention was to share my insights and experiences as both a provider and a patient.  If you’ve read any of my blog posts or gone to my website (, you know I’ve had an autoimmune disease most of my life.  In addition, I’ve nursed many animals with varying degrees of illness and written about their journey.

Over the past eighteen months, I’ve been enrolled and graduated with a graduate certificate in Health Humanities and Ethics.  It has opened my eyes to many unanswered questions for both patients and providers about their experiences in healthcare.  My classmates came from all healthcare arenas.  Our discussions punctuated the challenges of working in healthcare because of finances, policy, research, insurance, access, and a host of other dilemmas.  It has expanded my understanding of healthcare and made me a more informed and sensitive provider.

As I relaunch this blog, I wanted to share the direction I’m headed.  This year I’ll write about my experiences personal and professional.  I’ll explore how we can address doctor/patient relationships for optimal health.  I’ll share reviews of books related to both patient experiences and those of healthcare providers (educationally and in practice).  One of the key areas I’ll address this year is the concept of “legacy”. What are we leaving behind?  How will we be remembered?  What are we doing to improve our own situations and those of others?

I’m excited to explore these topics.  I’ll be sharing interviews with individuals showcasing personal experiences of illness as well as the handcuffs felt by many providers as they try and reconcile the realities of medicine with their intention for entering the field.

I hope you’ll join me on this journey and participate in the conversation.  Your voice is important because it’s about what we have in common, not what divides us (sound familiar).  I want all voices to be heard around the table because this is how we can advocate for what’s needed, what’s right, and what heals!

If you’d like to share your story (patient or provider), please email me at!

Posted in Caregiving

Healthcare Reform?

Welcome to Caregiver Friday!!!

The month of August has been crazy for the politicians as they reported back to their home districts touting the new healthcare plan.  They’ve been holding town meetings that have been anything but calm, in fact they’ve been down right chaotic.  It seems constituents believe that whoever yells the loudest will be heard.  Unfortunately, when people are coming from a place of emotion all logic gets thrown out the window and the message gets lost.

I get that the healthcare reform has to include everyone.  I also get that by providing the consumer with choices we may in fact curb costs because competition may get insurance companies to come up with new strategies for attracting and retaining consumers.  Are you noticing anything in all this talk about consumers?  They plans seem to be focused on the patient.   What about the caregiver?  Don’t our representatives understand that we’re not only talking about the cost to the insurers and the insured, but what about the cost of caregiving to corporations and employees who are paying big tax dollars into the federal government?  Who do they think is going to pay for healthcare reform if they aren’t going to add to the deficit or add taxes?  You, the caregiver, are carrying the cost with your tax dollars.

It’s time that we look at the needs of the patients/consumers with one big caveat, how does the caregiver fit into the equation?  I don’t usually get political in my sharings, but I couldn’t simply let the matter go without chiming in during such a critical time in our policy formation and social/moral obligations as human beings.  My hope is that you will look carefully as to how healthcare reform will impact your life as a caregiver.  We know it will reduce some stress such as financial stress if everyone is covered, but what about the emotional and spiritual impact of reform.

Please let your voice be heard.  It doesn’t matter where you fall on the continuum of the debate, just stand up, be heard, and participate.  Caregivers participate in the health and healing of their loved one, now it’s time to expand the scope of your participation.

Posted in Having a Voice, In the Know

The Humanity in Uncertainty

One of the best books I’ve read is Jerome Groopman’s “How Doctor’s Think”.  It’s great to get an insider’s view about the thought process of our healthcare providers.  For years we’ve gone to doctors as the only definitive answer to answering our health questions.  Doctors provided us with their “expert” opinion and followed their recommendations.  For some it may be a big frightening to look behind the veil of certainty and see doctors and human beings.

What does that mean?  It means that doctors deal with uncertainty.  There are medical questions they can’t answer and sometimes their opinion is a guess.  That part I don’t mind as long as the doctor presents the information in the context of “I think” or “this may be happening” as opposed to “this is definitive”. 

My experience with doctors and other healthcare providers is that when they seem more human, meaning they aren’t so stoic and righteous, I’m able to accept and hear their opinion without judgment or skepticism.  I can listen to the doctors thoughts and treatment plan and feel comfortable asking questions or even offering suggestions.

This is one of the changes in our modern day medical world, patients have become highly educated.  Many people walk in to their medical appointment with folders of information they have poured over looking for the best treatments and the best outcomes.  Some doctors are welcoming this newly informed patient with open arms and those are the medical personnel I want to partner with because feeling a part of my care provides buy-in on my part making more likely to be compliant and have a positive attitude about the outcome.

We all have an understanding of the type of medical professional we’ll work best with, so don’t disregard the all knowing physician if that’s what you need.  I just don’t want you to be disappointed if they don’t hold every answer to every question with only positive results.  Doctors can only make decisions based on their experience up to this moment, their involvement in continuing education and listening with an open heart to what their patients are sharing.  This is a new model of medicine but I believe we’ll all be healthier because of it.

Posted in Personal Conviction

Let’s Not Forget About the “Care”

I heard an interview on Good Morning America with talk show host Glen Beck.  Glen had gone into the hospital for outpatient surgery and it was followed by complications that became very serious.  During the interview he was outraged by the care he received in the hospital.  It became so bad while he was in the hospital that he wanted to die.

The message is how do we put the “care” back in “healthcare”.  We have a nursing shortage in this country and the trickle down effect is more patients and fewer nurses.  I recently spoke with a woman who was wait listed for nursing school.  It wasn’t about her qualifications, but they didn’t have enough instructors to teach, limiting the number of students they could accept in the program.

Having a relationship with you healthcare provider is essential.  It’s easier to achieve with a doctor you see regularly, like your general practitioner.  When we have a health crisis we’re often starting from square one with new medical providers and if you’re not a good advocate you may get lost in the shuffle.  It’s not about will you get care, but what kind of care will you get.

Remember in “Terms of Endearment” when Shirley MacLaine began shouting for her daughters meds?  I’m hoping you don’t have to get to the point of screaming, but having a voice is crucial to getting the best care.  The optimal experience is to become self-empowered and ask for what you need.  Unfortunately, we’re not always in a position where we can advocate for ourselves.  It’s crucial that you have someone who can advocate for you and who knows you well enough so they can help you maneuver the system. 

Hospitals are often on very tight financial strings and it’s time that we aided in the healthcare revolution.  As patients we should be entitled to a level of care that is universal.  We shouldn’t have emergency rooms with a ten hour wait.  We shouldn’t have physicians who are working over eighty hours a week and expect them to be conscious both physically and spiritually.  Be a part of the change and become empowered to ask for the care you want and deserve.