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, living with chronic illness, Living with Illness

Call Doctors Out of Hiding

Ever have this experience?  You’re at your doctor’s appointment and the doctor begins sharing information.  You have one of those “where am I moments and is my doctor speaking in tongues?”  Your first thought is probably how many syllables can any one word have and the other…are these words for real.  I bring this up because last night at a lecture there were questions on the screen before the program started.  One slide was a long word pertaining to an illness.  At the end of the evening an audience member asked what disease was that on the slide…the doctor confessed, there is no such disease.

Yes of course your illness is real, but if you’re “lost in translation” how is that helping you become an active participant in your healthcare?  The answer to this dilemma is twofold.  It’s up to us as patients to become familiar with basic anatomy and physiology (how your body works).  I’m not talking about expert status, but basics would be a start.  You need to ask questions, don’t do what we usually do in social situations and simply shake our heads in agreement.  This isn’t about will you look stupid, this is about comprehending all aspects of your health and wellness plan.  Don’t be afraid to ask the doctor to speak English.

When you make a request for the doctor to put it in lay-men’s terms you bring the doctor back into the room, sitting with you, instead of being off in Doctorland.  The truth is that if you have some basic health education and the doctor speaks plain English you will understand what they’re saying.  It’s not like you’re trying to decipher the Rosetta Stone.

The truth is that many medical professionals hide behind medical language because to do otherwise requires them to connect on a deeper level with their patients.  In a culture where doctors are taught to be unattached, creating an atmosphere of collaboration is a new model that must be explored.  Your other choice is to go to medical school and talk to the doctor in their language.  Do you have the time, money or inclination to go that far to understand microbiology?

What have you done to get your doctor to speak outside medicalese?  What happens for you when you’re better able to understand your diagnosis, care and treatment?  Let’s create a movement and make English the official language of doctor-patient relationships!!

Posted in after the diagnosis, care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Uncategorized

Caregivers are Undercover Agents

Welcome to Caregiver Friday!

I’ve been thinking a lot this week about all the roles that the caregiver takes on to support someone they love who is sick (or needs extra care like older adults). One of the roles that the caregiver takes on is that of undercover agent. You are the person who watches and takes mental and sometimes written notes about what’s going on with the patient. See the person who is facing a health challenge doesn’t realize that they leave clues wherever they go. It may things like what food gets thrown in the garbage or the amount of time someone spends in the bathroom. You, the caregiver, knows all, sees all and eventually will tell all.

You are the doctor’s first line of defense in finding out the truth about the patient. It’s important that you, if possible, go with the patient to their doctor’s appointment. Unfortunately, patients have a tendency to either downplay the serious of their side effects or their health in general or they out and out lie. That’s when the doctor turns to you and says “So what have you noticed since the last visit?” At that moment the patient is probably sinking into their chair because they’ve been busted.

What the patient doesn’t realize is that by you telling the truth, you help the doctor and in turn help them feel better, increase their hope and are a part of improving their quality of life. It’s not about being a snitch…it’s about wanting the best possible outcome for the patient. Whether the patient is embarrassed about their experience or feel they should be able to “handle it” , why suffer if you don’t have to.

Be proud of your status as an undercover agent. It may cause some tension at home, but in the long run the patient will understand that you are serving them in the highest way possible, by helping them get well.