Things I Think Doctors Should Understand 

About Their Patients: Part III

About a month ago, I wrote a post about how important it is for people to be kind to each other especially treating individuals with disabilities with compassion because of the extra insecurities they carry.  I shared the Pinterest quote, “You never know how long your words will stay in someone’s mind even long after you forgotten you spoken them.” This quote also rings true with doctors and their patients.  However, not only do their words stay with us, so do their actions.  That’s why this final point is not only necessary to have a good doctor/patient, it’s vital.

3.  In Your Excitement to Get a Teaching Moment, Please DO NOT Treat Us Like a Human Petri Dish:

This is a tough one to elaborate on, many times I’ve heard the phrases, “You aren’t text book, Whitney,” “We talk a lot about your case, Whitney, because it’s so rare,” “You’re a celebrity in the immunology world, Whitney,” “You’re very unique, Whitney.”  I understand what they are saying— I mean I have such a rare condition that for the longest time I was the only “known” one in the whole world with this disease.  Of course, I’m going to be a rare and unique “teaching moment,” to any doctor I see.  In fact, most individuals with a Primary Immunodeficiency will be “teaching moments” for doctors because in the medical world because we aren’t “horses,” we’re “zebras,” and we understand this. 

However, when my doctor brings in another colleague, a resident,

or a fellow, just so they can show them my medical abnormalities, even though I oblige them and I might laugh it off, it sometimes takes a toll on my emotions and self-worth. There have been several instances I’ve been sitting in the examining room; my doctor comes in the room tells me I look good and then asks if the resident or fellow they are training can look at my warts or my psoriasis. I would love to tell you this doesn’t affect me, but it does.  My heart often wonders if what they are really telling me is I look “good,” for someone with a rare disease that produces rare abnormalities.

         I have a specialist who has been treating me for almost 15 years.  We have a great relationship and I know he truly cares about my well-being.  However, his actions toward my deformities haven’t always been so tactful.  Nearly every single appointment he would ask to see my feet.  When I agreed to his request he would back away from me, standing as far from me as he possibly could with his hands behind his back, craning his neck to get a good look at my “abnormal feet.”  You may think I am exaggerating or making this is up, but I assure you it was a normal occurrence for many years. 

         One day when I was about 16 or 17 years old he asked me his normal request, “Uh, Whitney can I see your feet?” 

         I of course obliged, but on this day, I was quite fed up with his insistence of observing my “scientifically abnormal feet,” because I knew what was sure to follow. I turned my back to him to take my shoes and socks off, so I didn’t know for the first time ever he was standing right beside me.  I took the first shoe and sock off without a hitch.  I then took the second shoe off, but then had trouble with my sock.

It was stuck. 

So, I pulled and pulled and then finally yanked it off as hard as I could.  The sock flew behind me and hit my doctor right in the face.  I don’t think I had ever had a doctor look at me so shocked and offended until then.  I cracked up, his nurse practitioner cracked up, and my mother looked like she was about ready to clock me. 

However, this incident was a breakthrough for my doctor. Now he and I can look back on the incident and laugh. However awkward that appointment was, it helped my specialist realize he needed to treat me with more compassion.

I know my doctors aren’t being malicious; they would never do anything to hurt me.  But they are scientists and in their excitement to potentially learn something from my condition, they sometimes forget I’m already insecure and self-conscience of these deformities; therefore, their “teaching moment,” makes me feel like a medical oddity on display.  I know these teaching moments are essential for scientists to have medical breakthroughs so more people can be helped.  The research I have agreed to be a part of will assist doctors in finding new treatments and better quality of life for individuals living with MAGIS Syndrome— this includes my children who may be born with this gene mutation.  I’m so grateful I can be a small part in helping those medical breakthroughs come to pass.

However, I would encourage doctors to remember when those teaching moments come to go the extra mile to make us patients feel comfortable and understanding the vulnerabilities we might experience when being exposed in that way.  If our doctors do their best to make us feel like a person when a teaching moment comes, then I promise not only will our doctor receive purpose from it, so will we— and nothing can be better than that.

Things I Think Doctors Should Understand About 
Their Patients: Part II

     Webster’s Dictionary defines a dream as a strongly desired goal or purpose.  It might surprise you, but I believe people with chronic illnesses may dream more often than a healthy person.  Why, you ask?  Well the answer is in Webster’s definition.  It gives us purpose.  There’s a lot we can’t do when we have a chronic illness, but we can always dream.  Not only do our dreams give purpose, but they give hope that someday we may surpass the limitations our disease has given us.  God gave us the ability to choose to be More than our limitations and More than our disease.  Because of this, our disease doesn’t have to define us.  We define our disease and we do this by dreaming.  It’s so important for the people in our lives to understand how crucial dreaming is for us…especially our doctors.  Which leads me to point number two:

2.    Please DO NOT Belittle or Diminish Our Dreams:

This sometimes can be tough for doctors, especially if they have the kind of good relationship with their patients I described in the first point.  While, they have seen us at our best, they also have seen us at our worse.  When we tell them, we are going to attempt to do something that’s risky for our health, then, our worse moments are what’s going to take forefront in their mind; therefore, their initial response may be to diminish or belittle our dreams.  First of all, we, as patients, need to understand they care about us and their response stems from knowledge, caution, and maybe a little fear.  This doesn’t mean their response is the final answer, but it does help us remember our doctors are human too.  Not only do they remember when we were at our worse physically, they have the medical knowledge of what “could,” happen to our health if we take risks.   What our doctors have to see and remember is we know how our bodies are feeling, whether they are strong or weak.  We know when we can take a risk or when we should take it easy.  When we believe we can pursue a dream that may be risky, we have to be allowed to try to or we’ll never know if we can surpass our limitations. For someone with a disease, this is huge. 

     One of my biggest dreams was to go on a mission trip with a team.  In the spring of 2013, I was going to get to fulfill that dream by going to Trinidad. Well…when I shared with my specialist I was going to Trinidad (so I would know what shots would be needed and what preventative medication I should take), he about “flipped his lid.” His mind went back to a little over a year before, when I almost died. I had only seen him one other time within that year, and he didn’t realize was how well I was doing; God was healing me from my diseases and I was the healthiest I had ever been.  I assured him I would never disrespect his medical opinion, but I was the healthiest I had ever been, and I would never pursue this risk without knowing I could physically achieve it.

I knew these facts, but because of his reaction, I left that doctor’s visit feeling so ridiculous and my confidence diminished in what I knew too be true.  Thankfully, my specialist had ordered labs before I left the hospital and my results confirmed to my doctor what I had told him.  He called me that evening to inform me of my lab results and gave his blessing for me to go on my mission trip.  I appreciated his phone call because he showed me despite his first reaction, he truly cared about my dream.

 I went on the mission trip to Trinidad and had an amazing time.  I was incredibly healthy, just like I knew I would be.  If I had let my specialists first reaction continue to belittle or diminish my dreams, I would have never known I could surpass something that had always been a limitation in my life. 

My Immunology nurse practitioner told me one time with a chuckle, “Whitney, we don’t want you to live in a bubble, but some of the things you attempt to do scares us to death!” I can’t tell you how happy I was with her comment because it showed me I’m truly defining my disease and even though it makes my doctor nervous, he was beginning to understand how important it is to allow me to dream.

Now my specialist asks me if I have any trips planned and where am I going to go next.  He’s genuinely excited for me when I reach another milestone in my life. When we have a chronic illness, and our physicians can see we aren’t reckless with our health, and they  know we realize what we can handle, then we need them to encourage us in our dreams and even though it may “scare” them— we need them to allow us to live.  

Things I Think Doctors Should Understand 
About Their Patients

One of the most basic human needs is our desire for relationships with people.  God wired us this way.  This is the very reason He even created Adam and Eve so He could have fellowship and companionship with beings like Him.  Whether it’s with family, friends, or significant others, our desire for human connection is an instinct God has given us.  Yes, relationships take hard work.  Where everyone involved has to learn when it’s their turn to give and when it’s time to receive.  Without those relationships, we’ll feel a void.  When you have a chronic illness, you add doctors to the list of relationships you have. 

I don’t know if it’s because I have been on doctor overload the past couple of months, but it’s been on my mind quite a bit as to what I think doctors should understand about their patients. I truly believe it’s no accident who my doctors are. God brought them into my life to care for me because He knew they were the exact physicians I needed in my life.  This is so evident to me when I look back on my journey and see how they entered my life at the perfect time.  For these reasons, I believe that’s where my thoughts have evolved. These opinions have come from years and years of seeing specialists, but remember these are just my opinions— you, my readers, might disagree with me and that’s okay.  If you have a chronic illness and you have had these same thoughts and feelings then I hope my words will give you the encouragement to know you aren’t alone.

 Over the next few weeks I want to share what I believe doctors need to understand about their patients, because this is another way people with chronic illnesses can be more than their mountains- by understanding ways we can strengthen our patient/doctor relationships. I firmly believe when a doctor has the perspective of a patient, it’ll add another layer of compassion to how they practice medicine— and this is what I hope my blog posts achieve in the weeks to come

1.    We Want a Relationship with Our Doctors that Has Depth:

I have had two types of doctors in my life.  The one who comes in, we have a conversation about my life, what exciting things I’m involved in and I in turn ask them about their life and how they are doing. Then there’s the one who comes in and we get down to brass tax- this how you’re doing, this is what needs to be changed in your patient care, see you in six months.  Want to take a guess as to which specialist with whom I have more of a connection?  Don’t misunderstand me, I realize there are doctor/patient lines that can’t be crossed, but when a doctor wants to invest in their patient, to get to know them aside from their medical relationship, it helps the patient feel more comfortable and have another level of trust in the care they are getting. 

I was six years old when my disease began significantly pronouncing

itself in my body.  It was a new and frightening experience, but what helped with my anxiety was the relationship I had with my rheumatologist at the time.  Every visit I had with him, he would come in, sit me on the examine table, look at my mom and say, “Okay, mom you just sit over there and stay quiet; Whitney and I need to chat for a few minutes.” And that’s what we did.  We talked about school, shoes, clothes, how my sister was doing— how life was outside of my disease and because of this, I was comfortable and ready when it came to discuss how my health was doing. 

Now as an adult, the way my doctors invest in me is different, but because I know they care about my life outside of my disease, I’m comfortable with the care they are giving me.  When a huge milestone in my life happens, they are on the list of people I want to share it with, because they celebrate with me.  This is the crux of the matter really.  The doctors who makes the biggest impact are the ones who not only care about the medical side of our journey, but the quality of our life and our self-worth.