This is how I feel like people see me every time I walk through the doors of the pain clinic. This is how they make you feel if you go to the emergency room, the hospital, or anywhere you have to explain that you live in chronic pain. You would think at a pain clinic or a hospital they would be more compassionate but opioid abuse has become such a problem in the US, it forces them to be skeptical of anyone saying they are in pain. They ask you to describe your pain on a scale of 1 to 10. You would think when someone says 7 or 8 they would say “hmm, maybe we need to do something more for this person than what we are actually doing” but alas, they do not. They say “well, it looks like your pain medication is working. See you next month.”
I know this is not isolated to my experiences as everyone I have ever talked to that is in pain management feels the same way. As a patient, we are afraid to say “what you are giving me is not sufficient as I am still at an 8” because if you do, you know you are going to get “the look”. That quizzical eye that all but screams “ATTENTION EVERYONE, THERE IS ANOTHER JUNKIE IN MY OFFICE”. What it should be instead is “what can we do as doctors to alleviate your pain and make life more manageable?” This pervasive attitude is not isolated to the pain clinic I go to now. This is the third pain clinic I have been to over the years and it is the same at all of them.
Now, I try to see things from their perspective as well. There are a lot of drug seekers out there who just want their next fix so doctors have to be extra cautious. This is very frustrating as it makes it that much more difficult for those of us truly suffering to get the medication needed. There is also a balancing act that the doctors have to play. Too much and you create a zombie addict and not enough you leave your patient in agonizing pain. Before my brother passed earlier this year, he was on so many pain meds that some days he could barely function. His back was nothing but rods, screws and fusions and he was in constant pain but even I will admit that I wondered if he was on too many pain meds. I don’t think that any doctor out there wants their patient to suffer needlessly but they also don’t want to be the one that creates an addict. They also don’t want to be the doctor who was treating Prince, Michael Jackson, or Tom Petty.
Over the years, I have had eighteen surgeries and I live at a seven to eight on the pain scale every waking moment. This makes it very challenging to do anything productive but this doesn’t mean I’m not going to try. My choice now is do I find a different doctor (I would rather not as I like my current doctor), do I just stick it out and hope for the best, or do I speak up and say “doc, I’m not a junkie but I am in constant pain” and hope I don’t get thrown out on my ear. Getting tossed from a pain clinic brings a whole host of problems. The worst of which is no one else will touch you because you have now have been labeled as a junkie or a pill seeker. See the quandary?
Through my insurance provider I have a nurse advocate that calls me every three to four weeks just to check in on me. I posed this problem to her to see what advice she might have and what she would do. She told me I should stand up for myself and tell the doctor exactly what was going on, how much pain I was in. She told me that if I was unwilling to do it, she would do it for me. However, my last three appointments have been telehealth appointments due to the pandemic and they have lasted an average of one minute twenty seconds so I have not had much of an opportunity to really bring anything up. I have barely had enough time to say hello before the call is over. Hopefully my July appointment will be in person and I can have a candid conversation with my doctor.
One of the hardest things people who live in chronic pain have to deal with is if they do not have a solid support structure in place. I have heard numerous times that a person’s significant other does not understand them. It can be so frustrating if the people around you cannot understand what you are going through. I will admit that I have some friends that are like “dude, take some Tylenol, that works for me”. The reality is you are going to have people in your life that do not understand. One thing you will find, however, is if you do share your story with your friends and loved ones, you will be surprised how many of them do get it and will be there for you. I am so lucky that I have a spouse and close friends who, at the very least, try and understand what I am going through and are there to love and support me.
If you are reading this and you suffer from chronic pain, you are not alone. Whatever you do, don’t give up hope that there is a solution for you. I know it can seem as though there is nothing on the horizon but more pain and misery but I am convinced the right doctor is out there; one that is compassionate to your suffering and discerning enough to know your pain is real. I am sure you are like me and you want your life to be full and you would give anything for a single day without pain. I am convinced that day will come. For now, hang on, make sure you have a support structure in place and know that you are loved.