What would you do if your refuge, a place where you went to be cared for, suddenly became a place where you were dismissed, gaslit, and made to feel worse than when you arrived? If you’re like me, you would choose to leave—but what if you couldn’t?

Last year, I developed severe abdominal and chest pain and was advised by an on-call doctor to go to the emergency room immediately. They wanted to rule out a heart attack. I was already dealing with a frozen shoulder, which on its own is incredibly painful. And when you have changes in the brain and how it processes pain due to complex regional pain syndrome (CRPS), these issues become even more excruciating.

I’d successfully avoided contracting COVID thus far, so the last place I wanted to be was at the ER, despite it having been a sort of refuge in the past when dealing with severe pain flare-ups. I didn’t want to be exposed to COVID, the flu, or RSV, but I knew I needed to have my heart checked.

After an EKG ruled out any issue with my heart, I spent four hours in a waiting room filled with people who were miserable and sick. I was finally directed to a chair behind a curtain in the hallway, where the ER doctor told me it was going to be another six-hour wait for a room and a bed, as well as any treatment for my pain. He asked me what I wanted to do. What I wanted was for them to ease my pain so I could go home, especially since it was much worse than it had been when I got there after sitting in a hard plastic chair for so many hours.

I explained that on all my previous visits to that same ER, I was given IV ketorolac (a strong anti-inflammatory) and hydromorphone  (a very strong opioid). The doctor’s response literally shocked me, though upon reflection, it really shouldn’t have.

He looked at me and said, “Well, you don’t look like you need [hydromorphone].” After picking my jaw up off the floor, I suggested he go and look at my records to verify what I was saying. Sure enough, he came back with a bottle of the pain medication for me to take home, but no anti-inflammatory … and no apology for his inappropriate, uninformed, and uncompassionate comment.

Not only is pain invisible, it affects everyone differently. I have one of the most painful rare conditions known to man, rated 42 out of 50 on the McGill Pain Scale. This is higher than childbirth, amputation of a finger or toe, and non-terminal cancer. After attending several interdisciplinary pain management programs over the years, I was taught how to greatly reduce pain behaviors and responses. For example, looking at my facial expressions and body language, one would never guess how much pain I’m living with.

I wish I had thought of a snappy comeback for that doctor’s insensitive and uninformed comment, but of course, they always come to mind after the fact. Plus, I was in too much pain to think clearly, and frankly, I shouldn’t have to explain the invisibility of pain to my doctor. He should already know this.

Responding to Gaslighting
There is so much stigma and gaslighting that people with pain face on a daily basis, but what can we do about it? I have three tips that I’ve implemented into my life.

The first is to learn how to advocate for yourself. I grew up believing that doctors always had the right answer and to never question their diagnosis or treatment plan. I have since learned that is not always the case, and that if I believe I could benefit from a particular medication or treatment, then I need to say so. It can be uncomfortable, and it definitely takes practice, but speaking up about your needs is critical. Who is going to care about your health more than you?

I should have been better prepared for the ER doctor’s response, but I had been pretty lucky with my medical providers in the past, so I hadn’t anticipated his comment. Lesson learned, and now I will jot down and practice a few responses for similar comments I may hear from a doctor in the future.

Secondly, try to have someone go with you to medical appointments. I would’ve had an advocate with me on that awful visit to the ER last year had the COVID protocols allowed it. In fact, that was the only time in my entire life that I have ever been to the ER alone, and it happens to be the only time that I can recall a doctor doubting my need for pain medication.

A family member or friend can help you to remember important details to tell the doctor and take notes for you. I have also found that having someone with me adds more weight by having them vocalize and confirm my needs, such as adequate pain medication. Yes, I understand that this is unfair, believe me, but until we can change the system, we have to make it work for us.

Finally, I feel that the biggest need in pain management is education for medical providers and patients alike. The fact that veterinarians receive five times more hours of pain management education than doctors do is crazy. I believe with more education, there would be more empathy and compassion. But until the medical schools and boards catch up, it is up to us to try and provide some of that education.

This can be a bit tricky, as some doctors feel they have all the answers, but try to learn all you can about your condition and then try to find a doctor willing to discuss your findings. Encourage them to work collaboratively with you to find ways to best treat your symptoms. After all, it’s your body, so you should be part of your care team.A bonus tip is to consider sharing copies of the INvisible Project with your medical team. The magazine highlights the lived experiences of pain warriors through stories and photos and features articles quoting experts in the pain management field. They can be ordered for free at invisibleproject.org. In fact, I’m going to keep a couple of extra copies with me so that the next time a doctor tells me that I don’t look like I need pain medication, I can simply hand him or her a magazine and politely say, “Pain is invisible.”

–by Michele Rice, patient engagement lead, U.S. Pain Foundation