When patients with chronic pain seek out a doctor for help, they arenât 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 âdrug seekersâ or suggesting the pain is in their heads makes managing pain even more difficult.
Hereâs what they told us:
1. âIf I could take care of it at home with Tylenol, I wouldnât be here. I may not be crying or screaming, but itâs unbearable. Thatâs why I am here.â
2. âIt 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.â
3. âI am the master of my pain, and I trust me when I say what works and what doesnât. Listen to us, because each and every one of us is different, and our bodies and brains are different.â
4. âI am not seeking out drugs, I am seeking relief.â
5. âPlease 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. âAs a doctor, remember that at the end of the day, you get to walk away from me and my pain. I donât have that luxury. It stays with me whether I walk away or not, whether I think about it or not.â
7. âWe 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.â
8. âMy age doesnât matter; if they could write âtoo young for this much painâ on a prescription and I could take it and get it filled, I would do it in a heartbeat.â
9. âEvery 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.â
10. âI 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.â
11. âThe question âWhatâs your pain level number?â 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 wouldnât ask if I didnât really need it. Just believe me; thatâs all I ask.â
12. âI wish doctors knew that I am OK with them not having all the answers. I would much rather a doctor tell me âI donât know that answer and will have to look into itâ instead of pretending to know. I would rather a doctor be willing to learn with me.â
13. âI 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 itâs never going to go away no matter what job I do!â
14. âI can be happy and be in horrific pain at the same time. If Iâm smiling it does not mean the pain is less or better; it just means that I know I am more than this fragile body.â
15. âI wish these doctors who took an oath to cause no harm would realize every time they downplay our pain theyâre causing harm. Iâve been living, if thatâs what you call it, with RSDS and chronic pain for 25Â years. If I hear one more doctor tell me narcotics are bad for me Iâll scream.â
16. âIt 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.â
17. âI 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.â
18. âI 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.â
19. âI wish that doctors could understand that itâs something you canât out-think.â
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!
erin-migdol