4 Problems With The Pain Scale

My life has been filled with a lot of pain and many different types of pain. In the past 7 years, I have not had a single day without pain- not one. I have good days and bad days, but even the good days are filled with pain. Aside from the pain itself, the pain scale is one of the banes of my existence.

1. It Doesn’t Work For Chronic Pain

Not only is it a pretty terrible scale for measuring pain in the average person, but it is even less effective for people with chronic pain.

I’ve had a lot of people when talking about pain, make the comment “but you’re used to it.” This isn’t exactly true. My pain is actually worse and more unbearable than it has ever been before. Pain doesn’t hurt any less because you are used to it. What you really get used to is living with it. You get used to pretending you don’t have pain, using coping methods such as distraction, and hiding the pain.

If I had the average response to dislocating a joint that the average person did I would be crying, distorting my face, and screaming far too often to navigate this world. So I’ve learned to breathe through it and even smile. Only people very close to me can even tell that something is happening- and often they can’t even tell. Developing this coping mechanism is so necessary for living with chronic pain and such a problem at the doctor’s office.

I have had at least a dozen kidney stones. The pain of a kidney stone is slightly worse than my average Ehler’s Danlos pain, but not enough that I can easily shed my coping mechanism of hiding my pain. One night I began to pee blood and couldn’t keep fluids down so I went to the ER. I told them I had a kidney stone- I know full well what they feel like by now. The nurse told me I couldn’t have a kidney stone, “Even giant footballer men roll into the fetal position from kidney stones.” They did a scan and, of course, I had a large kidney stone. I eventually got treatment, but first was told I wasn’t in enough pain. It was infuriating and it has happened more than once.

It has gotten to the point where I almost feel like I have to try and visibly show the pain I feel inside, but it is still so difficult.

2. It Isn’t Standardized

Another problem is the scale means something different to everyone. I’ve been told 10/10 is the worst pain I’ve ever felt and also told that 10/10 is the worst pain I can imagine. These are far different measurements! For the same pain, I would rate it as a 8 on the first scale and a 3 on the second (I can imagine some horrific pain).

3. We Can Only Compare Pain- Not Imagine It

Generally, we can only rate our pain based on comparisons to other pain we have actually felt. That is the best way to understand someone’s pain. However, many people are at the extremes- they have either had a fairly pain free life or have experienced immense pain. Two people’s 7/10 may be wildly different. The scale does not work as a stand-alone tool without considering the pain patients have felt in the past.

4. The Scale Is Used Against Patients

Another problem with the pain scale is that it is commonly used by nurses and doctors against the patient. If you answer too high on the pain scale and they can’t see the cause of your pain, they will assume you are lying to get drugs. If you answer an 8 and then check messages on your phone (even though distraction is one of the best solutions to pain) they will assume you are lying. If you answer too low they won’t take you seriously. Instead of using the scale to help treat patients it is often used to hurt patients.

So if the pain scale is the problem what is the answer? Medical professionals need to listen to their patients when they describe their pain and take a look at their medical history. The pain scale needs to be taken with a grain of salt when used and needs to be standardized. Medical professionals need to make up their minds. What is a 10/10? Decide and then stick to it!

Do No Harm: A Ranking of the Harmful Things Medical Professionals Have Put Me Through (Part 1 #13-8)

The medical profession is supposed to be about helping people. I have been lucky enough to have some wonderful, caring, and compassionate health care professionals. I have also had some absolutely horrific experiences healthcare professionals. Dealing with doctors and nurses who don’t understand and make my life more difficult has been one of the hardest parts of having a chronic illness for me.

These professionals go to school for years and we are told to trust their medical expertise. Blindly following advice from a bad doctor can get patients killed- so should we blindly and always follow their guidelines? Many of us with chronic illnesses have been through the experiences I describe below so it is no surprise that some of us have anxieties about going to the doctor and don’t always trust those in the medical profession.

We turn to these professionals in a time of great need and commonly aren’t even treated as human beings. Unfortunately, I know I’m absolutely not alone. Stories of terrible and harmful doctors and nurses fill my support groups on a daily basis. So here it is- a list from least harmful to most harmful (in my personal opinion) of what medical professionals have put me through in the past six years:

13. Letting Their Ego and Arrogance Get in the Way
We have all heard of them, doctors who think they are god’s gift to the earth. They went to medical school or nursing school and now know everything and are never wrong. There is no way a patient could help them understand their condition or offer any input into their personal care. After all, this information is coming from a lowly patient.

When these arrogant doctors can’t easily find a diagnosis suddenly the patient is the problem. They will tell us we need to be more positive, try harder, and better comply with treatment (even if we already are).

“Have you tried like… not being sick?”

Other egotistical doctors will tell patients that they are are faking it for attention, that it a psych issue, or that their patient’s pain tolerance is just too low (see #10). These doctors are on the patient’s side until they can’t figure something out; then they turn into villains in their patient’s medical care.

In Helpful Medical Professionals:
One thing I look for in doctors is the ability to say “I don’t know.” Some of my conditions aren’t understood well so I don’t expect my doctors to know everything about everything to do with my condition. Admitting they don’t know the answer to something means they are more willing to ask a colleague or do some research.

12. Refusing to Research My Condition
I understand that working in the medical field is difficult and busy. However, if a patient seeks medical help and the medical professional hasn’t heard of their patient’s condition or only vaguely remember things from school decades ago it is essential to take the time to research their condition. Different conditions can change how medications work and need special considerations. If someone doesn’t know about a condition, does nothing to find out, and decides to treat their patient anyway they are putting their patient in danger and not giving them the best care.

 In Helpful Medical Professionals:
Medical professionals who are willing to research conditions they aren’t experts in are definitely keepers. These professionals actually care and it makes a world of difference in our care. If they get stumped they may ask a specialist for help, but they won’t dump their complicated patients.

11. Deciding You’re “Someone Else’s Problem”
It is common for complicated cases to be passed on from doctor to doctor. That is why some POTS patients have to see over 36 doctors to get an accurate diagnosis. Doctors commonly dump “difficult” patients with ridiculous excuses. I even had a doctor yell at me and tell me to go elsewhere. I had just moved and simply needed a doctor to prescribe antibiotics for strep throat. He did so and told me to work on finding a more experienced doctor because he didn’t think he could help me. Fair enough.

I chose this doctor so I could get in quickly while looking for a more experienced doctor (which can take months to years). He was good enough for what I needed in the short term. A week later I developed pleurisy. For whatever reason, this tends to immediately happen to me after colds, the flu, strep, and most viruses. All I needed was a steroid shot- I’ve been down this road many times.

The doctor absolutely chewed me out for coming back to him. I was too complicated and he wouldn’t treat me. When I explained I had an appointment with a much better doctor than him the next week and just needed help until then he realized what a jerk he was being. Needless to say, I did not go back to him.

One doctor who I thought really wanted to help suddenly made an 180 after I had been seeing her for months. In the beginning, she was so excited to help me and try everything she could. In the end, she decided to suddenly drop me. She later became an oncologist which seems like a terrible choice for someone so lacking in empathy.

Recently I had a pain management doctor tell me “they don’t manage chronic pain.” That’s the exactly the purpose of the clinic. When my case became complicated they just gave up and didn’t even care enough to come up with a reasonable excuse.

 In Helpful Medical Professionals:
Medical professionals who stick with complicated cases are hard to find. If you do find them, keep them around! Unfortunately, it is hard to tell if your new doctor, physician assistant, or nurse will actually stick around and not write you off further down the line.

10. Calling Your Pain Tolerance Low
Medical professionals commonly write off their patient’s pain as exaggerated or made up. In response to pain complaints, these professionals insist their patient simply has a low pain tolerance.

This happened when I had my wisdom teeth taken out. My recovery was absolutely dreadful and lasted weeks longer than it should have. I actually had to withdraw from school because I was so sick between dealing with my wisdom teeth and my concussion I had at the time. I woke up in the middle of the procedure moaning in pain- even with anesthesia. I am absolutely positive the oral surgeon hit a nerve during the procedure, but instead of admitting to her mistake the doctor told me I must have a low pain tolerance.

I was also told my pain tolerance was low when I had my pulmonary embolism (a blood clot in the lung) too.

“You just have the stomach flu and a low pain tolerance.”

I’ve had multiple doctors tell me I couldn’t have kidney stones because I wasn’t outwardly displaying my pain. They insisted that something less severe was going on and I was overreacting to pain by coming to the doctor.

“I’ve seen grown men screaming on the floor in the fetal position. You can’t be in that much pain.”

They were obviously proven wrong. Of course, I received no apology. Patients with chronic pain get outstandingly good at pretending to not be in pain and putting on a brave face. For example, as long as I am under a 7/10 on the pain scale, unless you know me really well, you will never just how much pain I’m in (unless I tell you). Pain looks different in every person. This attitude is just ignorant.

 In Helpful Medical Professionals:
Medical professionals who actually believe their patients are hard to find. It is pretty easy to figure out early on if they are going to support you and believe you or dismiss your pain early on. Doctors who understand that severe pain doesn’t always mean laying in a fetal position screaming are the best doctors.

9. Believing You Are Just Not Trying Hard Enough
The first line of approach to treating POTS involves lifestyle changes. You can read more about them here. The lifestyle changes are not fun by any means but compared to my symptoms these changes were worth a try. For a while, I complied with every single suggestion. I was the perfect patient. When I didn’t improve dramatically, I started to get blamed for my symptoms not improving because I wasn’t trying hard enough. Often lifestyle changes alone aren’t enough to help manage a condition. I have since figured out what changes actually are beneficial to me and my doctors respect that. When a medical professional blames their patient for not getting better it is time for them to get the boot (assuming the patient is honest with their doctor).

Most of us who are chronically ill desperately want to feel better. We will try nearly anything that may work to improve our condition. So a doctor blowing their patient off because the patient doesn’t get all better from what they suggest is absurd. Some patients are exceptions, but it isn’t acceptable to immediately jump to blaming a patient for treatment that doesn’t work for them.

In Helpful Medical Professionals:
I work out 5-6 times a week in an attempt to help my symptoms. Exercise is incredibly hard every single day. It is easily the hardest lifestyle modification to comply with. Pushing through severe pain, exercise intolerance, dizziness, and extreme tachycardia is a battle every single time I exercise. Having doctors who acknowledge the hard work I am putting into my health, whether through working out or otherwise, is incredibly refreshing. The best medical health professionals acknowledge the hard work their patients put in ( assuming they are making changes), not chastise them for not trying hard enough. One example of an awesome, supportive doctor acknowledging their patient’s hard work can be found within this lovely article.

8. Not Following HIPPA
All my illness began when I was 17 so for a while my parents were involved in my care and medical decisions. By the time I had turned 18, I was the expert in the family on my body and my conditions. My parents did research but know a lot less about my condition than I did. So when at 19 years old a medical professional called my mother to relay incredibly sensitive information (a test testing for cancer) I was livid. My mom called me right away to tell me the news, but playing telephone with sensitive information is unacceptable!

While this has been the most blatant example of my privacy being disrespected I have had other times in which my privacy has been violated. For example, lab technicians have taken pictures of abnormal and interesting test results that had my personal information on them and I watch them share the results with their friends. Unfortunately, not all medical professionals take privacy seriously.

 In Helpful Medical Professionals:
This one is simple- find doctors who respect patient privacy. We all have a right to have doctors who share medical information with only the people the we choose; it doesn’t matter if they are family. Life and death cases, in which the patient is unable to make their own medical decisions, are obviously an exception. In general, if a medical professional violates patient privacy, they need to be immediately reported to the medical board.

These are pretty terrible things to happen, especially from a profession dedicated to doing no harm. And it gets much worse! Watch for part two where I discuss the top seven harmful things I have witnessed from the medical profession.