Weasel Words
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I believe the two most disheartening words you can hear from a doctor are “chronic pain.” As in “You have chronic pain.”

Or worse, “You just have chronic pain.” This was what a rheumatologist, one of the rotating team of doctors I see these days, told me recently. The reason? My hands hurt even though my lab tests looked fabulous and there was no visible swelling or redness in my joints. This doc didn’t know why, so he said, his frustration with me plain in his voice, “You just have chronic pain.”

Ah. Well. That explains everything.

I get it, OK? Rheumatoid disease is often mystifying, and this doctor was mystified. But when he told me that the reason I was in pain was that I “have chronic pain,” instead of just admitting that he couldn’t pinpoint the reason for it, we stepped into a new realm of patient-doctor interactions: the faux diagnosis. According to him, the pain I cope with frequently in my hands, wrists, ankles, and feet these days isn’t because RD is attacking my joints. Instead, it’s this new-ish condition, “chronic pain,” and it has a far more amorphous and, in some ways, frightening source than my RD. It’s coming from my brain.

Or (just whisper this) it’s all in my head.

By telling me I have chronic pain, this doctor casually dismissed my suffering as un-real and therefore, beyond his ability to treat. Although I left his office that day with a prescription for a new biologic medication to take along with all my other prescribed DMARDs, I also left feeling extremely low. I had become one of those baffling “chronic pain” patients in a practice that no longer treats “pain,” even though it’s one of the main symptoms of rheumatoid disease. Patients with pain have to see a pain specialist.

The stigma that hovers around the words “chronic pain” is devastating.

Here’s why. They appear frequently along with the government-sanctioned and hyped scare-words “opioid crisis.” If you take opioid pain medications to keep your “chronic pain under control,” you’re an addict. That’s how the general person on the street perceives you. You’re a junkie who maybe abuses your prescription opioid meds, or who maybe sells them on the street, or who maybe haunts emergency rooms for free-of-charge “fixes,” or who maybe “doctor shops” or who maybe uses multiple pharmacies to get your illicit drugs. Ultimately, you probably use heroin, buying it on the street and shooting it up. You’ll likely overdose or get one of those random, terrifying, deadly fentanyl doses. You’ll be dead, soon. Society can do without you anyway, you useless freeloader.

Harsh? Yes. But if you take prescription opioids to control your pain, that’s the widespread public perception.

The words “chronic pain” imply that people who suffer long-term pain—for whatever reason—are imagining it. That it’s not real. Or worse, they’re faking their pain. After all, how can we know if it’s real or not?

The mind-body connection is a fact. Our brains generate the sensation of pain—no matter what type, acute or chronic—in reaction to nerve stimulus. Acute pain—the type caused by an injury—lessens and fades with time as the injury heals. Chronic pain, on the other hand, sticks around long after the injury has healed. Sometimes it never goes away.

Acute injuries aren’t the only source of long-term pain, however. Inflammatory musculoskeletal diseases like rheumatoid disease, ankylosing spondylitis, psoriatic arthritis, and lupus, etc., cause continuing attacks on the joints in the form of flares. It’s like the joints are constantly being injured, often without an opportunity to heal.

And there’s the rub. When a doctor tells a patient with rheumatoid disease or AS that they “just have chronic pain,” they’re using weasel words. It’s a betrayal of the first order. Because this pain isn’t the amorphous, inexplicable pain associated with long-healed back injuries or the still mysterious fibromyalgia. The underlying disease causes this pain—and it often manifests in spite of “good” labs and a lack of visible signs, like swelling or redness.

Now, I get the concept of pain generated by inexplicably hyperactive nerves that send false distress signals to the brain. This is real. And I get how alternative pain relief methods like meditation, physical therapy, exercise, acupuncture, etc. can help to relieve it, or at least to keep it under a modicum of control. I can even—reluctantly, I’ll admit—accept that the pain I feel almost every day in my hands might be of this type: amorphous, maybe even imaginary, caused by hyperactive nerves. But to have a doctor use the weasel words “chronic pain” to my face without offering any further explanation–or even hope—is a dismissive slap in the face.

And I’m still reeling from it.

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15 comments on “Weasel Words

  1. mcadwell says:

    Definitely ‘weasel words’! Next set of ‘weasel words”: It’s all in your head. I have spent the last 16 years, an over 25 doctors, to find out why I am in so much constant pain. I have had 6 doctors bluntly tell me the pain was in my head. (The last time this happened was September 2016!)

    I have seen SEVERAL Rheumatologists and was at the end of my rope last April when I bluntly told the rheumy that I was considering suicide because of the pain and because of the incompetent doctors in my area. Of course he wanted to refer me to a psychologist but I told him no. I told him that if the pain would just be alleviated I wouldn’t even think about suicide!

    He looked at my swollen, red, painful knuckles and started taking x-rays of my joints. Then he put me on hydroxychloroquine. So, this rheumy is treating me for RA – BUT – he won’t tell me I have RA. He says he needs synovial fluid to make that diagnosis but the only swollen joints I have are my knuckles, which are too difficult to get any fluid.

    So…add ‘it’s all in your head’ to the list of weasel words.

  2. Wow – an excellent article Wren! After reading all the comments so far, it appears as tho all of us responding have experienced the common feeling of “you’re not listening to me”… or the “you’re not paying attention to what I’m saying” attitude. I used to brag about the Rheumy that I’ve gone to since I was diagnosed – some 14 yrs ago now. But I was tempted recently to investigate a new RA dr. due to the overscheduling of her time. When I have an appt. I never schedule anything after it because I can not remember the last time I came to an appt. and got in to see the Dr. in less than an hour PAST my appt time!

    This is terribly frustrating even tho I’m “retired” (after disability for 9 yrs) I STILL find it irritating to wait for such long times to see a dr who has supposedly “scheduled” a time for me. I think this says to the patient that their time is not as valuabl. If I were to show up for an appt 2 hrs late and expect to be seen, they would laugh. Yet, I regularly sit for 1-2 hrs in the waiting room AFTER my expected appt time.

    That’s just bad planning. The doctors try to spin it as “well we take as long as needed with our patients, you wouldn’t want it any different would you?” Well, ofcourse not! But then don’t schedule as many people in the same time slot!! You can not be with 5 people every 15 minutes all day and not get behind!

    To get back to my decision to stay with my DR (even with my above complaints) is because of the opioid scare. I’m afraid to change Drs. because my current RA dr. knows I don’t abuse my meds (oxycodone) and I have been on the same dose for 3 yrs without the need to increase. It’s not that I don’t have pain still, but the dosage of 1 in the AM and 1 in the PM is enough to cover the worst of the pain and not interfere with my everyday activities. If I went to a new Dr. I’m afraid I’d be starting all over again and you never know how the new dr. feels about addressing pain with narcotics.

    I have been so mistreated in hospitals, ERs, outpatient centers (like for the colonoscopy) and even dentists due to the fact that I take “oxy”. I almost wish it had some other name because the minute they see or hear that I’m on oxy, I am at the very least, compromised in their eyes, and more probably an addict.

    Worst of all is when I have to stay overnight or longer at the hosptial, I am taunted by the nursing staff if I ask for my pain pill ON TIME. I think that the opioid “crisis” has been blown out of proportion because SOME people abuse it. And unfortunately for us, we have been placed in the same category as true addicts.

    I can only say that if it comes to the point of taking away the only pain meds that help in my situation, I don’t know what I’d do. But I DO know that it has kept me from changing doctors for all the wrong reasons.

    I think of my pain med just like my prednisone. I could never just STOP my prednisone. I could even die if I did that because I’ve been on a dose for all 14 yrs. (5mg/day now). So in a way, I am “addicted” to a steroid. But nobody calls me an addict for that. My body would have to slowly, very slowly, go off steroids (and maybe I couldn’t) because my body isn’t making even the minimum of a corticosteroid anymore. Yet, Prednisone is not put in the same category as a narcotic with all the drama of addiction.

    I don’t know where the opioid crisis is heading, but let’s hope for the sake of pain relief, that it’s not taken away from non-abusers.
    Thanks for letting me rant a bit on this. I guess I’m tired of hearing about the “opioid crisis”

  3. Dalia says:

    Weasel words is an excellent way to describe it! I’m sero-negative and all of my blood work is “fine”, too. But there are days the pain in my wrist and hands never stops. I know that we are our best advocates! It’s tough having docs that don’t get it or just give up. I’d confront your doc openly, and ask how they’d feel in the reverse case?
    I know these docs are usually very busy and I have had the same kind of let down with my rheumy’s office. They used to be so great but a lot of changes internally and calls aren’t returned, messages aren’t delivered – it’s so frustrating to fight that along with our every day challenges! Wish I had better advice – but I am so sorry you had to deal with that! Gentle hugs and hope that your doc is better next time!

  4. Deena says:

    I’m so Very Happy you posted this!!..It’s as if I wrote this article myself. I just had an endoscopy and colonoscopy a couple of weeks ago at which time my gastroenterologis became Very Frustrated with me because I awoke THREE different times during the procedure as if it was my Fault!!..He had maxed out on the mg of the medication he was using to sedate me. I am very up front and honest with ALL of my physicians about what meds. I take the dosage and miligrams and for how long I have been on them. I myself have been or was in the medical field for over 20 years so I’m Very well aware of the stigmatism associated with people that have chronic pain. I am also very compliant with my meds.. Bottom line is its Really not Fare how we with RA and OA because yes I have both and Chronic pain are judged not just by the general public but also by the what is considered the Medical Experts. !!!!

  5. Since I was diagnosed I’ve really thought my rheumatology team were something special after seeing how some people get disrespected I was grateful for a team with several “ra/pa/as patients” as staff members which was just Fantastic to explain the extreme pain to someone and they immediately understand how bad it is? Made up the better points in my early experience of this disease. At one point they threw in the fibromyalgia diagnosis to explain any pain they didn’t think was ra, I also have scoliosis so that has a big impact on my pain levels and mobility, personally I can tell what pain is what and think they should just listen to what I say- I am the expert by experience lol. Recently things changed some of the good staff have left and my rheumatologist suddenly changed path with me, declaring I had no visibly swollen joints (I’ve never had a period with no swelling at all since this disease hit me) and saying I was in remission from the rituximab which I would say I’ve had no benefit from the drug after six months and I will be having another infusion next month. The last time I had any benefit from any medications was over a year ago I was on enbrel/entanercept and whilst I didn’t get a full remission there was a notable improvement in my swelling/weight/dropped many pain meds/increased mobility but my lungs went downhill and they took me off it, now it turns out it’s the ra damaging my lungs not the drugs rituximab was my only option available and I’m gutted it’s not working for me, why on earth my consultant wanted to tick boxes that were not true I do not know but I’ve also caught her out several times now where she has lied to me. When two doctors tell you two oppposing facts, how do you know who to believe and how can I entrust my life and treatment to someone who seems to be dishonest?? cRAzy

  6. Sneed says:

    I suspect rheumatology is its infancy with lots more to learn. I’m on my second rheumatologist as the first, a lady, had enough of the effin government and retired rather than put up with any more of their BS. Good for her. I liked her a lot but noticed she would ignore the issue or change the subject when I mentioned a symptom she could not fit into her expectations or knowledge. She also had a good sized practice to manage as a sole practitioner while I only had one body to track so I noticed several times over about 13 years when she told me something different than she had said before. Same experiences with her successor, a man so I think the bottom line is that there is an awful lot they just don’t know but that’s not something they want to tell a patient and it’s likely they don’t realize how much they don’t know.

    It seems to me it adds up to you need to trust your doc, but not completely, and you must trust yourself and dig deep when the doc’s advice seems off.

  7. miaj says:

    It’s hard to fathom how someone who specialises in rheumatology could ever put the word ‘just’ in front of ‘chronic pain’. It’s annoying how easy it is to dismiss invisible things. I’m so sorry you had that experience, but I can relate — the first rheumatologist I saw told me she didn’t think I had “anything inflammatory” and then went back to her notes leaving me sitting there staring at her. It wasn’t until I said “so what do I do now?” that she looked up at me blankly as if no-one had ever asked that question (turns out I did have RA all along, so maybe I’m mistaken and she’s just constantly baffled ;). The thing is, I really think health professionals of all types underestimate the value of honesty. If you don’t know what it is say so — maybe we can work it out together. If you don’t know the best treatment — says so and then make a suggestion or referral as to what might come next. Leaving someone hanging just because you don’t know the answer is worse than just uncaring, it’s cruel and harmful.

  8. Cloudy says:

    I really appreciated this article! It has made me feel so much better to know that others have had the same experience and have felt the same way about it. When society seems to be suggesting that you might be a hypochondriac or a slacker it really helps to know that you’re not alone and that someone else is taking a stand against this perception. THANK YOU Wren.
    I think my rheumatologist is pretty good and I’m glad to have him – but because of that I was all the more devastated when I told him I had wide-spread severe pain and he just didn’t seem interested. I had been looking forward to my appointment, expecting to get some help, and instead I was told that my blood test results were good so the pain wasn’t caused by my RA, it must be fibromyalgia, and he doesn’t treat that. He did give me an information sheet on it but he also told me NOT to research it on the internet “because there’s a lot of unreliable things about it on there”.
    So I went to a GP. She told me I should be pleased about the diagnosis! She pointed out that it meant that although I was in a lot of pain the pain wasn’t damaging my joints – so “isn’t that good news!” Well yes, that is good news – in the long run – but the pain was so great that I just could not focus on the long run, I needed help now! I cried. So she diagnosed depression. I disputed that. So she queried my attitude to mental ill-health – she seemed to believe that I thought mental ill-health carried a stigma. (I was very deeply offended by that) I gave up on trying to explain anything to her and went to a different GP.
    I did an on-line course on managing chronic pain (using cognitive behaviour therapy) and it was quite helpful. My pain levels definitely decreased.
    For the past 6 months though my pain levels have been worsening again. My next rheumatologist appointment is quite soon, so I’m hanging out for it. I just don’t know though whether I will get some help from it or whether my blood tests will say I don’t need it. I don’t feel as though I am anywhere near as important as the numbers on my tests. I’m just crossing my fingers and hoping – well, figuratively that is, my fingers don’t actually cross all that easily.

  9. Grrrrrrr. My brother’s new pain doctor went a step further and told him that no one ever died from it. I’m here to differ. People with long-term chronic pain commit suicide at a rate much higher than the general population. In addition to the excellent points you made, there is some discussion that chronic pain is now a condition. As in “pre-existing condition” with all the ramifications of health insurance, worker’s insurance, etc. that come into play. I really am not liking where this conversation is headed. Thanks for an insightful article.

  10. Wren moderator author says:

    Hi, Carla Kienast!
    That’s an awful thing to say to a pain patient! How hopeless your brother must have felt, and how alone with his pain. And you’re so right–that doctor was dead wrong. This “chronic pain” issue IS an issue, and one we’ll be hearing a lot more about as more and more people are denied the pain medications they need. My hope is that given time, the pendulum regarding the opioid crisis will swing back toward the center and that those of us who live with frequent pain will be treated more appropriately and with the empathy and care we deserve.
    Thanks so much for your comment, Carla. More to think about! 🙂

  11. Dave says:

    Sorry that you got hold of THAT type doctor!!! I had a bad flare a few months back when the biologic I was on stopped working. My labs were “normal.” My Rheumatologist answer to that was: “Your body knows what is going on better than any lab test.” I am thankful for a Dr. like that.

  12. Wren moderator author says:

    Hi, Dave,
    My previous rheumatologist was like yours: he noted my lab tests but was more motivated by what I told him about how I was feeling. I loved the guy and still miss him a lot, even though it’s been about a year ago, now, that he was transferred. The rheumie(s) that replaced him base their treatment on lab tests only, which is really frustrating. Lab tests count, of course. But when symptoms continue in spite of “good” tests, action is necessary.
    I’m glad you have such a responsive and empathetic rheumatologist. Do take care of yourself, and thanks for your comment! I hope to “see” you back here again soon. 😀

  13. Richard Faust moderator says:

    Thanks for writing Dave. My wife, Kelly Mack (a contributor here) has a rheumatologist who asks first thing “Kelly, how are you?” In this article she writes about this and the overall looking beyond the tests and instead at her as a person who has had a lifetime living with a disease as assessing wellness: https://rheumatoidarthritis.net/living/assessing-wellness/. Best, Richard (RheumatoidArthritis.net Team)

  14. Sneed says:

    “When a doctor tells a patient with rheumatoid disease or AS that they “just have chronic pain,” they’re using weasel words” AND admitting to incompetence.

  15. Wren moderator author says:

    Hi, Sneed,
    I appreciate your taking the time to comment–thank you! I was frustrated with this doctor, but in reality, I think he was simply overbusy, overworked, and frustrated as well. Maybe I even just caught him on a particularly trying day. I want to think that, anyway. But I still believe that “you just just have chronic pain” are weasel words–they really mean “I don’t know.” I’d prefer that truth, myself.
    Thanks again! I’d love to hear from you again in the future. 🙂

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