Sometimes it isn’t you but them…really.

This is one that has always been very hard for me. I have seen and identified the issue multiple times but it is hard for me to really get it. In my mind, the professional should be able to know when they are off. They should be able to identify when they have the wrong perspective. I have been able to do that in my work life, they should too. The thing is that this doesn’t happen and we are really likely to be the ones hurt. We are even more vulnerable as rare illness patients. This can cause lasting damage from misdiagnoses and such. I really believe that this is an underestimated problem. I can think of more than 5 times that this has happened to me…I know it has happened rather than assumed.

In our groups, we often hear people rant that the doctor is an idiot and things like that. Maybe this accounts for more of that. I know that there are other issues that account for poor treatment and misdiagnosis but I really think that it is possible to reduce exposure to some of that. Expanding this concept to a person having a bad day or it being the wrong time of day for them to handle the issue, I definitely think it is more widespread. At this level, I can think of times that I am culpable but with much less of an impact. When you add the other challenges we face, it is of tremendous benefit for us to be able to identify situations that I am speaking of and either avoid the situation or the provider. I was foolish for many years thinking that they would get it because they were capable and had credentials. That is not a good way of thinking. To make things a little easier, I am going to set the stage with a non-medical example.

When I went to college, I decided to be a music performance major for a quite difficult instrument. This instrument requires years of training yet I only had one year. I ended up getting into a university with a conservatory setup that was ranked number 4 in the country at the time. The instructor for my instrument was highly sought as an instructor. Time after time, I heard so many wonderful things about my teacher. If you are going to be a musician, it is the teacher that is the most important thing to look for. I was overjoyed but also scared. How did I do it? How did I get a scholarship? Would I get there and then be humiliated because I wasn’t good and they made the wrong choice? Would I be able to make it? Overall, I was positive with expected doubts given the situation. Making the right impression was important. This person would have a lot of influence over my professional life.

When I got there, I was blown away but worked very hard. However, I was concerned that my biggest fears were real. My instructor played solitare on the computer or smoked for most of my lesson. My hour lessons were only 10-15 minutes! How would I ever catch up? Secretly I thought that my lessons were so short and he passed me on everything because he realized that he made a mistake bringing me there and had lost interest. I began to work harder. I lost my social life to focus on oboe because I wanted to make him interested again. I knew it couldn’t be him. I spoke with his students the year before and they had amazing things to say. It had to be me.

Slowly I got clues. I saw the reaction of the grad student that had her lesson before me. She was an amazingly talented foreign student but she beat herself up horrible because of having bad lessons. I noticed it elsewhere. One of the graduate students yelled at him. I then noticed it elsewhere…his references to suicide, his obsession with pornography and shocking us, his general lack of interest in anything until that one day in the semester that he was awesome. It wasn’t until I got multiple senior students off campus for coffee that I learned that it wasn’t me. In fact, some of us it was a mutual revelation. The grad student that had her lesson before me broke into tears ending in sobbing. Many of us thought that we were the problem. I communicated with him and he lashed out at me. Ultimately, after 2 years, I took a year off to transfer. Things broke down in the studio that year off and he actually reached out to me to thank me for how I handled it and said that it helped him identify what he was doing. A couple of years later, he went on medical leave after an attempted suicide.

After this, I repeatedly told myself that just because someone is an expert doesn’t mean that they are always right. I was trying to convince myself of this because somehow I didn’t really get it. This was actually early preparation for what I experienced in medical situations. I still struggle but I am better. Not responding appropriately to these situations and trusting the authority has cost me dearly…years of my life and multiple misdiagnoses. I don’t think that we realized just how much these issues impact us so I am going to discuss it in detail. Let’s discuss a situation that is more medical.

Early in trying to get a diagnosis and treatment for what ended up being Cushing’s Disease, I was sent to another specialist. I had one question but my endo had another. I tried to explain things and she just did not get it. I would say one thing and she would reply back from left field. She ended up diagnosing me for something that in no way I thought I had BUT I kept going because of expectations from my endo. I was compliant even though it felt wrong. There were times that I saw this doctor and it was clear she had just been crying. She stared out the window and spoke slowly and quietly. At this time, I had started to become freaked out that doctors were ruining my life. I thought that they were competent but wondered if they just hated me. There was something that made them completely miss the boat just on me. (Do you see the similarities? I know I am not alone.) I started volunteering at the local hospital hoping to see something different that would change my perspective….see how I could change myself to get what I needed. I was sure that if I worded things differently, it would all fall into place. That is not what happened.

One day when I was volunteering in the Emergency Department, a physician was called in for a consult. There was an exchange when he passed by and then a nurse rolled her eyes. She whispered to the group near me to meet her in a place…she had something to share. I didn’t want to know. From the body language, I was planning on being elsewhere. Unfortunately, I had to be in that area and overheard part of the conversation. So the doctor that I was concerned about, it was her husband. They discussed how badly they felt for her because they had been married x years and he was having affairs and shoving them in her face. They talked about how it had to be impacting her both personally and professionally.

This was a blessing for me. I still had trouble believing the situation but at an appropriate time and when I had enough solid things against how she was treating me, I quit going to her. It was when I had surgery that I made my last appointment. Her response was, “but that is brain surgery.” I replied back perfectly. Part of the reason I continued to that point was for that resolution. I was so sure of this.

I went into a lot of detail for both a non-medical and medical example of how this can impact our lives. It is hard to identify but so important. Sometimes the issue is small and things improve for the next appointment. Sometimes there are other patterns. I had one healthcare provider that really missed the boat over all but was functional first thing in the morning but really off by noon. It is important to pay attention to these things. If you notice a pattern with a healthcare provider that you like, schedule your appointments at times that they are “on.” Pay attention so you can catch these things. Remember, sometimes it is them and plan accordingly.