When patients with chronic pain seek out a doctor for help, they aren’t always greeted with the compassion and respect they hoped for. While some doctors are supportive of those with chronic pain, too many patients are treated with suspicion and contempt when they discuss their pain and treatment options with their doctors.
We teamed up with the US Pain Foundation to ask our communities what they wished their doctors knew about their lives with chronic pain. Their message to doctors: Calling chronic pain patients “drug seekers” or suggesting the pain is in their heads makes managing pain even more difficult.
Here’s what they told us:
1. “If I could take care of it at home with Tylenol, I wouldn’t be here. I may not be crying or screaming, but it’s unbearable. That’s why I am here.”
2. “It is not fun for me to live my life in solitude, so please believe me when I say I am in pain and need some type of relief.”
3. “I am the master of my pain, and I trust me when I say what works and what doesn’t. Listen to us, because each and every one of us is different, and our bodies and brains are different.”
4. “I am not seeking out drugs, I am seeking relief.”
5. “Please realize I want to work with you and cooperate with you. Please understand my pain can be severe without being on the floor screaming, because I have learned to hide my pain visibly to get by every day. And please, view me as an ally to fight against my chronic pain, not the obstruction.
6. “As a doctor, remember that at the end of the day, you get to walk away from me and my pain. I don’t have that luxury. It stays with me whether I walk away or not, whether I think about it or not.”
7. “We are not to be treated as a collective, we are individuals. And certainly not a pesky number to get through before your game of golf.”
8. “My age doesn’t matter; if they could write ‘too young for this much pain’ on a prescription and I could take it and get it filled, I would do it in a heartbeat.”
9. “Every single patient reacts to pain differently. One might scream or cry, one might be silent, one might talk or laugh to distract themselves, but others may not be capable.”
10. “I wish they could experience the pain themselves. It can be so hard to describe, and often I forget the extent of it by my next appointment.”
11. “The question ‘What’s your pain level number?’ means absolutely nothing to me. All-over pain? I live with levels of four to five daily, so if you are asking my level beyond that which I live with, then yes, my pain level number is going to be eight, nine or 10. Please believe me, if I am asking for pain medication, my pain level is beyond what I can handle. I wouldn’t ask if I didn’t really need it. Just believe me; that’s all I ask.”
12. “I wish doctors knew that I am OK with them not having all the answers. I would much rather a doctor tell me ‘I don’t know that answer and will have to look into it’ instead of pretending to know. I would rather a doctor be willing to learn with me.”
13. “I wish my chronic pain management doctor would write a letter to social security disability explaining how not treating pain could cause more problems and that it’s never going to go away no matter what job I do!”
14. “I can be happy and be in horrific pain at the same time. If I’m smiling it does not mean the pain is less or better; it just means that I know I am more than this fragile body.”
15. “I wish these doctors who took an oath to cause no harm would realize every time they downplay our pain they’re causing harm. I’ve been living, if that’s what you call it, with RSDS and chronic pain for 25 years. If I hear one more doctor tell me narcotics are bad for me I’ll scream.”
16. “It is almost impossible to care for four growing boys and a [terminally ill] stepfather without some type of pain management. Doing simple household chores can leave me bedridden for days if I attempt to do them like a normal parent. My children deserve a mom who can function on a daily basis.”
17. “I want doctors to understand that when you are in chronic pain, pain medication only helps dull the pain. You do not enjoy pain meds. They are not for fun or a high. They are strictly to be able to function at a little higher level. Makes you able to get out of bed without tears in your eyes. Chronic pain eats away at your very being.”
18. “I wish they understood just how much pain we are in all the time… and I wish they would not lump us in with the people who overdose on opioids like Prince, Michael Jackson, and such… Just because some pain patients need medications like opioids to make their quality of life better, say to help one get out of bed or function better. Instead they choose to treat all of us as addicts just because we have chronic conditions.”
19. “I wish that doctors could understand that it’s something you can’t out-think.”
What do you wish you could tell your doctor about your pain? Let us know in the comments.
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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