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.