by Noki4, TPC Forum/Chat Participant

I need to start out with a disclaimer that no healthcare provider was injured during this encounter.

stop-stigmaRecently I have been having knee pain. I know that my knees are damaged from the degenerative disease that is slowly eating away at my joints. I experienced yet another pain flare which started out like all other flares with knee pain with some swelling. This was not my first time dealing with a pain flare and I know it will not be the last. Yet, this time it was different. The swelling did not go way and the pain increased instead of eased. I don’t remember injuring this knee, yet I do trip and stumble from time to time. What normally works for me is using my self-care pain relief toolbox:

  • Ice
  • Rest, while elevating it
  • Wearing a prescribed knee brace when I am up and around
  • Taking Ibuprofen over a few days
  • Using my breakthrough pain medication sparingly, as prescribed and when the pain is severe and interfering with my ability to be up and around

None of this worked. So as previously advised, it was time to see the doctor. So, I called my primary care doctor’s office. If I chose to go to the urgent care center or the emergency room, they would not have full access to my medical records and would not be familiar with my pain conditions. Naturally, I would end up following up with my primary care provider anyway, so why not start out there and cut out the middle man. I found out that my wonderful doctor who has been my saving grace for 20 years was not working this week as he is on (a much needed) vacation. The office staff suggested I see one of the other doctors in the practice who is covering for him. That, my friend, is where this story gets ugly and really fast.

After 20+ years of dealing with my own chronic pain and 10 years of advocating for people living with pain, I thought that I had heard every negative, disrespectful, unkind, stereotypical remark that a healthcare provider could say to us as individuals who live with pain. I was wrong! Today, I heard some comments directed right at me that just blew my mind. Part of me wished that my husband would have been in the room to witness this, yet, I am glad he was not as it could have turned nastier than it did. The worst of this is that this experience happened at my wonderful primary care provider’s office by one of his partners. The one place I should feel secure to open up about my pain.

The office visit started out normally, the nurse took my vitals, weighed me and made notes on why I was there. Things went downhill quickly once the doctor walked in. He came in and said hello to me. He then glanced at the laptop in front of him and asked me why I was there. I begin to tell him about my knee pain. I also let him know that I have had issues with my knees before, that I had x-rays done in the past and had seen an orthopedic doctor several times who was referred by my primary care doctor.

He glanced my way and says,” left knee?” I replied yes to confirm. He then says, “yea I thought so from all that swelling I can see.” He started out with the typical questions. Did I injure my knee? I said I don’t think so but it could happen as my bones are brittle. He then wanted to know what the pain level was using the standard 1 – 10 pain scale. Before I could open my mouth and respond he says, “Before you speak you need to realize that if you say anything above 5, I am not going to want to believe you.” I was shocked, I am sure my mouth fell open and hit the floor. He goes on to say that “the pain scale is used to give a healthcare provider an idea of how much pain a person can feel and that for swelling of the knee, the pain could simply not be any higher than a 5.”

I asked him to please repeat what he meant because I am sure I misunderstood what he was saying. He repeated it and I sat there confused and plain out befuddled. I then replied back that one of us is using the pain scale wrong and laugh to hopefully lighten up the situation. I continue by explaining that the pain scale was always used as a way for me to measure the pain I am feeling to help healthcare providers help me: 1 being the least pain and 10 being the out of my mind intense kind of pain. He laughed and said “well that is the way some providers use it but that is not the way I use it with my patients.” (I was thinking to myself that I sure wished I could rewind time so I could go back and change my mind about seeing another provider since my doctor was not there this week.)

He then wanted to know when the last x-ray or MRI was done on my knees. I said a couple years I think. He responds with “you don’t know the days and years, you should know these things.” Once again I was shocked and I replied with laughter in hopes of preventing this train wreck from getting any more out of control that if I kept a running list of every time I had been x-rayed or had an MRI I would get nothing done but updating the list and that I glow in the dark because there has been so many of them over the last 20+ years. He replied with a very serious look “we as doctors expect you to know those dates.” I simply said that I would keep that in mind and try my best to keep that information up to date in my phone so I could access it for situations like this. (I was smiling on the outside and starting to slightly come to a boil on the inside).

I then asked if he could possibly look that information up since the office now has electronic records. He replied, “Yes I could but I don’t want to waste my time.” (By this time I was thinking…Could this appointment get any worse? I should have known the answer was a great big, yes!) He tells me no need to waste time looking for the last x-ray since he has to order a new x-ray to make sure there were no broken bones. I said I realized they would want to do a new x-ray and I was sorry I did not have the dates of the last one but wouldn’t he want to compare the last x-ray to the new one? He replied, “no I am not a radiologist so there is no need to waste my time looking, the radiologist would do that for me.”

I went to x-ray and back to my examine room to wait. When he came back, he finally decided to do an examination. I got up on the table and he started bending and twisting my knee all kinds of ways. I let him know that it was really painful a certain way he moved it. He looked at me and says, “Now it can’t hurt that bad.” All I could think was…Are you kidding me? Am I not supposed to tell a doctor when it hurts during the exam? He finished the examination and told me I could sit up and that he was sure that with the amount of swelling that I had injured myself and that it could be a torn meniscus or cartilage. He goes on to say that the x-ray doesn’t show those type of injuries and repeated he is not a radiologist. That was when the whole visit went straight to the point of no return.

He looked right at me and said, “So I suppose you came today because you want a narcotic pain medication?” My reply was, “Wait! What! Where did that come from — I didn’t ask you for pain medication. He went on to say that when a person who is already taking a narcotic medication goes to the doctor’s office, urgent care or the emergency room with a new pain, it is because they want additional narcotic pain medication to abuse.

If you haven’t figured it out — by this time there was steam coming out of my ears from the silent boiling that was happening inside of me. I simply could no longer take this mental abuse any longer. I said in a rather loud voice. “Where did that come from? I did not ask you for pain medication. I asked you to help me find out what is wrong with my left knee and I tried to give you the past history of the issues I have had with that knee!”

I went on to say this: “I must share that I am a little shocked that you are a healthcare provider and you use the term narcotic. Police use that term to describe illegal and legal substances of abuse. I do not take narcotics! I take an opioid pain medication that my doctor, your colleague — prescribes to me for pain from the degenerative joint disease that I have been living with since my early 20’s.”

He replied, “Yes I can see that you do here on your chart. I don’t agree with the narcotic medication you are taking, nor do I agree that my colleague should be prescribing them for you.” Then he went on with this: “What you don’t understand is that family practitioners are on the front lines of the war on drugs. It is the family doctors, like myself, who  are being watched and spied on by the DEA and the FDA. Family doctors, like myself, are being threatened by the DEA and FDA because they say we started the drug abuse problem by prescribing narcotic pain medications. I want you to understand that the pain scale is used not to understand the amount of pain a patient is in but rather a means for family doctors to access if the patient is trying to drug seek. There are also new rules and regulations in place from the DEA and FDA that the family practitioners must follow carefully if we wish to keep our medical license. They now tell us how much of a narcotic pain medication we can prescribe and which ones we can prescribe in order to stay off the watch list. There is so much that a patient simply does not understand when they come looking for narcotic pain medications for every day aches and pains like a knee injury.”

I could not believe what I was hearing and I could not sit there without defending myself and all the legitimate people living with pain. I said to him that I utilize opioid pain medications as just part of my overall treatment plan which consists of exercise, therapy and so much more. I also asked him if he could please write down where I could find the rules and guidelines he just told me about. I explained that I advocate for people living with pain and that I work with some of the top experts in the healthcare field regarding opioid medications, the war on drugs and advocacy and I was sure that they were not aware of these new rules and guidelines because they would have shared that information with me.

He said, “What I meant is because of the war on drugs, we family doctors have to believe the worst instead of the best in our patients. We have to try to figure out if the person sitting in our office is drug seeking or doctor shopping. Did they cause an injury to themselves just so they could get additional narcotic medications? Are they addicted to a narcotic pain medication that they have been taking and now need a higher dose due to the addiction?”

He was looking at the laptop and typing faster and faster. I figured he had already made it clear that I was wasting his time with my “possible knee injury” and was only there for pain medications. As far as he was concerned he had already made up his mind that I was one NOT to be trusted because of the opioid medication I use as just one part of the big picture of my pain treatment — so why not jump in the bull pit with both feet.

I asked very politely if he could stop typing into my medical file and look at me. I then tried one more time to give him some past information about my knee issues. I asked him if he really mistrusted me that much and he remarked that he truly mistrusted all patients who presented with pain that is not caused by an accident. He then returned his attention to his typing. I did not need to be a rocket scientist to know that he is typing his personal opinions of me into my records.

He then laughed and asked me if I was worried about what he was writing in my medical file. He then said this to me, “Who do you think Dr. Pop will believe? You, the patient who takes narcotic pain meds or me, his colleague who is in the same healthcare practice with him?”

I was stunned that he would even ask me that question. Was he threatening me?  I smiled and countered his remark with the comment that I had no worries because my primary care provider and I have “a trusting professional relationship that we have built on for over 20 years and continue to build on. I have never given him a reason to distrust me and I trust him with all aspects of my healthcare.

He made it clear that he was finished with this appointment and told me that he was prescribing physical therapy and asked when my next appointment with my regular provider was scheduled. When I said in two weeks he said that would work out fine as I would be able to tell if the physical therapy was working.

He stood up to leave but before he could run out the door, I quickly asked if it would be a good idea to follow up with the orthopedic surgeon that I had seen in the past before beginning the physical therapy?  I explained the reason I was asking was because if there is an injury due to a tear isn’t it possible that more damage could be done by the physical therapy since the therapist would not have a clear picture of what was possibly going on? He replied sure why not if that is what you want to do but be warned that they will not prescribe you any narcotics either. He then turned and left.

As I said before I have been on this journey for 20+ years. In that time I have had healthcare providers tell me early on that my pain was because I had lazy muscles because I was a stay-at-home mom and did not have a real job. That was 20 years ago and with all the discoveries that are made in medical technology a person should not have to be subjected to a doctor visit like I had then or now.

I do understand that a doctor works very hard to get through medical school and I am sure they are frustrated with the war on drugs as much as we the people living with pain are. However, that does not give them the right to speak down to their patients, EVER! To instantly distrust someone and in the first 5 minutes of a visit to decide that that patient is a drug seeker or doctor shopper just because:

  1. They report pain
  2. They happen to be prescribed pain medication, particularly if an opioid is one of them
  3. They try to explain their past medical history when that provider refuses to take the time to read what is in front of them.

I am disgusted, frustrated and angry. Please hear me, primary care providers. Not every person living with pain is a drug seeker or doctor shopping. Just because they have a new illness, event or injury does not mean they did it to themselves to obtain more opioid medications. Please treat them as you wish to be treated, with respect and dignity. Please don’t judge them or form an opinion in the first couple minutes of the visit—keep your prejudice in check!

Sure I will admit that there are people out there that do drug seek and doctor shop because they are dealing with substance abuse or mental health disorders. However it doesn’t mean everyone is. Start out with trust—please—and listen. They may be reporting a legitimate reason to be concerned. Try to figure out what is going on; don’t just dismiss them, help them. If you find you may be dealing with substance abuse or medication misuse, evaluate and refer to the appropriate resources.

Be a part of the solution, not part of the problem! When you assume, you make an A—S—S (out of) U (and) ME.

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