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?

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Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Having a Voice in Healthcare, living with chronic illness, overcoming adversity

I Wish My Vet Saw People

If you follow me on Twitter (@GregKatz2), Facebook, or on these posts you know I have a black lab named Tashi that was diagnosed with MRSA (Methicillin-resistant Staphylococcus aureus) about seven years ago. Half her life has been spent visiting doctors, taking a host of medications, and having numerous tests where she’s been poked and prodded to get cultures. Throughout this process she has endured pain and discomfort, never giving up her loving nature.

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After fighting her most recent infection for the better part of a year, I’ve had the chance to be grateful for her doctor (Dr. B). He’s dedicated to her well-being. He took her case and as a result changed the infection control policies at the Veterinary Hospital. Most of all, I’ve watched him spend time with Tashi, never giving up on her and always trying to make her as comfortable as possible. What could he teach medical students who will eventually be treating us in doctor’s offices and hospitals?

Meet the patient where they are. I’m fortunate because I feel as if I’ve become partners with my medical providers. I always ask questions and I’m aware of the latest research on my own conditions. There is no power play in the exam room. Our vet is very sensitive to the power dynamic and when he examines Tashi he sits on the floor so he can see her eye-to-eye. He will often bow his head so that she knows that he doesn’t have to be dominant, in theory. He’s also the keeper of the treats, always a way to endear himself to her.

Follow-up is very important to the health and healing process. I feel like I’ve attracted patient positive doctors. They’ve been concerned and their follow-up has been extraordinary. One of my doctors had ordered some lab work and I didn’t do it within a timely manner. I received a phone call from him saying he hadn’t seen the results come across his desk and wanted to make sure I had gone for the lab tests. I felt like he was definitely looking out for me. Dr. B goes above and beyond the call of duty. After Tashi has an office visit, the phone rings about 8pm a couple of days later (after the vet office closes), the doctor checking to see if she’s making progress. Wouldn’t you like a follow-up call from your doctor to see if you’re making progress?

Dr. B always dialogues about side-effects and outcome strategies. He’s clear about what I’m willing and unwilling to do for treatment. Some of the medications Tashi has been on have had such horrible side-effects that they have been removed from the repertoire of possible treatment strategies. Minimizing suffering while seeking treatments that work is paramount to us working as a team. Dr. B doesn’t make it a “my way or the highway” session.

What can you take away from my experience with a vet that treats Tashi as if she were a person? Never allow your doctor to talk down to you. Be clear that you may not have gone to medical school, but it’s your body, your health, and your journey. Let the doctor know what’s important to you regarding the relationship. I always share with the doctor my professional background in healthcare so he knows from the start I’m going to be very involved (sometimes too involved when I begin to self-diagnosis. Read my post on anchor bias).

Select a doctor that makes you feel like you’re a priority. Unfortunately I spent five months taking Tashi to the vet a minimum of three times a week for treatment so I had a lot of time to ask questions and discuss her progress. Stay in contact with your doctor so he has up-to-date knowledge of how you’re doing. Many healthcare systems have email for their staff; use it! Don’t be afraid to ask questions in between appointments.

Lastly, find a doctor who has a strong commitment to compassion. Dr. B has always treated Tashi as if she were his own. He has done amazing amounts of research on her condition and is always looking for the latest and greatest treatments for her condition. I wish he saw humans because I’d be his first patient!

Looking to explore how to select a physician that is willing to partner with you?  Looking for education, support, and inspiration when facing a health challenge?  Visit http://www.survivingstrong.com

Want to explore how art improves healing?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis

Leading Your Own Master Class

The Oprah Winfrey Network (OWN) may not be a success, but some shows are obviously taking center-stage on the network.  It shouldn’t be a surprise, but the shows that are doing well are the shows where Oprah’s touch is evident.  In these cases she’s either doing the interview as in, “Oprah’s Next Chapter”, or “Oprah Winfrey’s Master Class”.  It’s the later that caught my attention last night when the guest of the show was the famous actress, activist, and fitness guru, Jane Fonda.

If you haven’t seen the show it allows the guest to speak about their life dividing the segments into “life lesson” segments.  The show is tasteful, insightful, and inspiring.  When I was listening to Jane Fonda speak last night I kept my notepad close by waiting for those bits of wisdom that would get me to think about my own life in a new way.  The lessons that caught my attention were: Allow your vulnerabilities to show; we’re not meant to be perfect, we’re meant to be whole; and Empathy is revolutionary!

This got me thinking about all the client/participant stories I’ve heard over the years and the lessons I’ve learned from all of you.  On the other hand, I started wondering what it would be like if I put you in front of a camera for an hour and you got to distill your life down to four or five pivotal life foundations.  This is very different than conducting a life review because it’s not about summing up your life at the end; it’s about punctuating those things that have made you who you are today!

I believe this can be a great part of your health and healing journey.  After your diagnosis you may have began to reflect on your life, your experiences, relationships, and adventures.  What have you taken from each of those experiences that will support your journey to wellness.  One of the things that Jane Fonda made very clear is “It’s never too late!”  That would mean that even for you, getting a diagnosis of a chronic or life-altering illness doesn’t have to be an end, but a beginning.  It can be a launch pad for your new life.

What would you impart to us if you were filming your own Master Class for the Oprah Winfrey Network?  What do you believe are the most important, helpful, inspiring lessons you’ve learned that will propel your life and ours forward?

Posted in Having a Voice in Healthcare, Living with Illness

Medicine and the Human Factor

I was watching the news yesterday when a report about a Southwest Airlines pilot hit the airwaves.  Evidently, the pilot didn’t know that his mic was stuck in the on position and he went on a tirade about the fact that the flight attendants were either gay, old, or fat, leaving him with limited choices for sexual exploits.  It obviously took those on the radio frequency by surprise, but more importantly it raised some eyebrows amongst the Southwest Airlines crews.  So what does this have to do with being diagnosed with a chronic or life-threatening illness?

It’s been discussed and written about in multiple books about how physicians refer to patients as “the kidney in room 202”, or “the brain tumor in 202”, reducing you, the patient, to the most minimal of descriptions.  Why is this important?  Because the goal is to have the medical team look at you as the total package, not simply your disease.  There is more to you than simply your diagnosis; the diagnosis is a part of you, it doesn’t define you.  When or if we hear providers speak this way it reduces our faith in them as people.  This is why so many medical schools are starting to incorporate Medical Humanities into their curriculums.  The idea that if you bring some humanity into the medical arena the relationships between physician and patient get better, diagnostics are more accurate because future physicians are being trained to listen to the patient’s story; their illness narrative.

If you haven’t read Jerome Groopman’s, “How Doctor’s Think”, please finish this post and rush to the bookstore for a copy of this book.  If you’ve been diagnosed with a chronic or life-threatening illness this book should be surgically attached to your body so you have it handy at all times.  The introduction shows the importance of the illness narrative because it helped diagnose a young woman who had been battling her illness for over 15 years.

Words are powerful so using them to improve the doctor-patient relationship instead of hinder it is crucial on your journey to health and healing.  As your illness narrative unfurls it provides vital information for your care and treatment.  The doctor should be more of a detective then mechanic.

What would you like your medical provider to know about you?  How do you think your story could help in your care and treatment?  What have you been leaving out of your story when you visit the doctor, that could be the linchpin that makes you better or well?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

I Was A Better Patient Before I Got Sick

Ever notice that before your diagnosis of a chronic or other life-altering illness you were a much better patient?  It’s possible that’s because you only saw the doctor when you were sick, in need, and you knew it was probably a one-shot deal.  You could exchange pleasantries during the annual physical, but there was no dependency or tension.

What came next took you and probably your doctor by surprise.  The idea that your body was hiding something that is harmful is always a shock, especially to primary care physicians.  They are the first stop on the run-away train.  Primary care physicians are the ones who sit by your side trying to figure out what’s the problem and then when something catches their eye you hear the words, “I’d like to refer you to a specialist”.

Once the doctor, whether it be your primary care physician or the specialist, utters the famous line, “I’m sorry to tell you…” then the doct0r-patient relationship changes.  At the start the doctor-patient relationship may be adversarial, after all who doesn’t want to shoot the messenger.  The hope is that over time it become collegial.  Let’s face it, working as a team will be more productive on your journey to health and healing.

But let’s go back for a moment because being a “good” patient before you got sick was more about hedging the odds, kind of like the insurance industry betting you will get sick and you betting you won’t.  It’s easy to be a “better” patient when your visits are infrequent, there probably aren’t many if any billing issues, and the biggest discussion is about exercising more, maybe losing a couple of pounds, and getting rest.

All of that changes with a diagnosis of a chronic or other life-altering illness.  Our healthcare system has forced too many to have to deal with outrageous medical bills.  (Medical bills are the number one reason people declare bankruptcy)  Billing often causes tension between the office staff and the patient.

Then of course are the issues related to treatment.  As your doctor gets the test results and makes recommendations, the doctor-patient dynamic is changed.  It’s no long simply taking the recommendations and making an appointment for the following year.  The test results and the recommendations now bring you and the doctor into deeper discussions, not only about treatment and the course of the disease, but heart wrenching topics like end-of-life care.

It’s easy to see why you, the patient, may become gun-shy, maybe a bit angry or hostile, and on the other hand you may retreat and be sad.  Understanding that your relationship with your doctors is no longer simply routine, but an ongoing and more intense relationship must be reconciled in your soul.  The two of you are together for the duration.

I hope you’ll take a look at the relationship you have with your medical provider because now is the time to take action if you feel things need to change.  It’s no longer simply about cutting red meat out of your diet, and the ante has been raised.  This is one of those moments when we have to remember, “Life isn’t the way it’s supposed to be; it’s the way it is”.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Expect the Worst…Hope for the Best

Years ago I was fretting about some college exams and my mother made sure I understood, “You expect the worst, hope for the best and most times it ends up somewhere in the middle.”  I was reflecting on that philosophy this week while going through some of my notes from reading I’ve done in the past couple of months. 

I read, “Dancing at the River’s Edge”.  The book is co-written between a woman with lupus and her doctor (the doctor’s portion much more interesting than the patient’s).  There was a line in the book where a doctor says to the woman, “I can make you better, but I can’t make you well.”

This line resonated with me because it followed the expect the worst…hope for the best mentality.  The idea that once you receive the diagnosis there is always a crack in the cosmic egg.  That one little Achilles heal that even if you recover leaves a spot of vulnerability.  It’s the reason why it’s so important to revel in the joy of health on any level.

The first question to ask yourself then is, “What is better mean?’  It would require you to take an inventory regarding your physical, emotional, and spiritual being and mark that as your baseline…the starting point.  If you were to “get better” what would that look like?  How would you know you’re experiencing “better”?

Understanding your personal health continuum allows you to become more intimate with your life on many levels.  It allows you to tune into your body, mind, and spirit so you’re better able to provide the resources they need to improve your current situation.  Having the ability and the willingness to move up the health continuum propels you on your pilgrimage to health.

Like the line in the book says, you may not be well, but better is an improvement and that leads to hope.  Hope is the foundation for moving along the health continuum.  It fortifies body, mind, and spirit. 

What does better look like to you?  How would you like to work on “getting better”?  Are there things you’d like to commit to so you move in that direction?  I’d love to hear the actions you’re taking to “get better”.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

It’s Time to Come Clean

Remember those little white lies you told as a child hoping no one would find out the truth?  Even as we age those little white lies creep into our brain and come full throttle out of our mouths.  Is it unavoidable?  Maybe not, but should we be drawing a line in the sand about the lies we tell?  Actually, maybe it’s not about the lies we tell others, but about the lies we tell our selves.  I’m not sure what color those lies are, but they aren’t white because they can lead to dire consequences.

I’ve been in many exam rooms with patients when I worked in a health clinic and I’m amazed how many clients embellish the truth (that sounds better than lying).  I remember working at a drug and alcohol outpatient center and the director told us that when doing an intake if a person tells you they drink 2 to 3 beers a day double it if not triple it and you’ll have the truth. 

I remember the movie, Same Time Next Year, with Alan Alda and Ellen Burstyn.  He tells her that he has two children.  Later on in the story he says he has three and she asks, “Why didn’t you tell me the truth about how many kids you have?”  he replied, “Only having two made me seem less married.”

We have such a strong need to look good in the eyes of others that we may be short-changing our healthcare.  I know that I’m guilty of telling the doctor that I take my medication religiously and don’t know why I had a flare, but if you actually look at the date on the Rx bottle you’ll see that there have been times when the 60 day supply last 75 days…you think I missed a few days?  Why did I do it?  I didn’t want to seem like a non-compliant patient, and I didn’t want the doctor to think I didn’t take my health seriously.

Truth be told I was a bit ashamed…but as I learn more about my body, develop a stronger relationship with my doctor and stay turned in to my physical being I’m in better shape.

What are you holding back from your provider?  It doesn’t even have to be a physical issue.  Perhaps you sleep too much, don’t eat enough, or feel sad all the time.  You don’t have to seem like the happiest person on the planet when you speak with your doctor.  Your honesty will serve both of you.  The doctor will be able to make an appropriate diagnosis and get you the treatment or support you need.

I know we live in a judgmental culture, but the place we have to start is with ourselves.  Stop judging yourself.  Stop beating yourself up.  Begin having faith in you!!!