I don’t know about you, but I don’t generally pay others to abuse me.
Now, I have the greatest respect for the medical profession. My own mom (rest her soul) was a lifelong nurse and nursing teacher, and I’ve been blessed with several good doctors. I’ve got nothing to complain of, currently.
But not all fibromyalgia and chronic pain patients are so lucky. And I think it’s high time we blew the lid off the big not-so-secret secret behind dealing with chronic pain: sometimes, our biggest detractors wear white coats.
Call it the God complex. Call it institutional arrogance. Call it personal fear or ignorance or – heck, call it Bertha, if you like. But whatever the cause, we deal with bad doctors and nurses all the time.
Whether it’s the general practitioner who thinks you’re making your pain up, or the nurse who’s consistently rude to you in the exam room when you ask for a medication refill, those stories need to be told, and I’d like to tell ’em here.
So send me your bad doctor/bad nurse stories — you can find me on Twitter, or use the contact form here on this site. Be sure to tell me how you dealt with the problem, if you did deal with it, or whether you changed doctors as a result of this encounter.
One request: please leave out any identifying personal information for the person in question. When I share the stories, I’ll redact all of your personal info as well, of course. If you want to be really anonymous, just leave me a comment to this post.
Let’s get this epidemic problem out of the dark corners and bring it into the light, where it belongs.
I was a pedestrian struck by a car in 1992. I ended up with a bulged, herniated and eventually degenerated L5-S1 disk, an unstable sacroiliac joint in my pelvis and a torn meniscus in my knee. (I still have chronic back pain and have found relief with Tramadol as well.) My “doctor horror story” happened after I had an arthroscopy to repair my knee. I had gained back less than 5 degrees of mobility in the joint. It was still swollen and I think I had just stopped wearing an immobilizer when I went to a chiropractor for spinal manipulation. It wasn’t even my first appointment with that doctor. He knew me and knew about my recent surgery, but, nevertheless, I did remind him not to even try to bend my knee. And a minute later, he grabbed my ankle and shoved it — before I even had time to shout — up towards my butt. There was no way my knee was going to bend, it just made my upper body swing in the opposite direction! I couldn’t believe that he didn’t know me or listen to me or even pay attention to the way the knee looked long enough to not cause me more injury. That was the last time I saw that doctor.
Hey Dona – thanks for the comment. Go tramadol!
Wow, that experience must have been awful. I wonder whether he was just distracted that day, thought you were lying, or what?
Y’know, that reminds me. Something similar happened to me with a massage therapist once: I’d just had a bout of sciatica and told the therapist quite clearly to avoid direct manipulation of the sciatic nerve. I also told her why.
Well, she did it anyway — direct, deep manipulation of the sciatic nerve. I almost shot off the table with this searing pain shooting down my leg and butt. I started yelling at her — that’s a first in a massage setting for me. Her response? She got this skeptical look on her face and started with the “Well, I don’t know …”
Oh hell to the no.
I left. I actually left, mid-massage. No way was I letting this woman touch me again. After I suffered through another flareup for two days, I honestly thought about suing her. Instead, I went back and told her what had happened and told her I hoped this would encourage her to do a little more studying and listen to her clients. To her credit, she did listen and thank me for coming back to her.
I wonder what a doctor’s response would have been…
Thanks for sharing your story!
I lost the use of my left hand one day in 1983. No warning, no injury. Married to a radiologist at the time, I quickly trooped into several specialists’ offices. Neurosurgeon said it was a pinch nerve in my neck and offered to “surge.” Rheumatologist didn’t have a clue. Neurologist put me in the hospital for a week. All he could say is that I had brachial plexitis, which means inflammation of the nerves in the brachial plexus. A description, not a diagnosis. He put me on a high dose of the steroid Prednisone every other day. Fried my brain (I was in the last semester of a Masters degree). When I found out how dangerous steroids are, I stopped taking it, resolving to be disabled for the rest of my life.
In 2005 I was tested for and diagnosed with Lyme Disease. Use of my hand has returned somewhat although the damage is probably not 100% reversible after all these years. I’ve wondered, however, why no one ever tested me for a bacterial infection when I first had it.
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I spent 10 years bedridden with a variety of symptoms ranging from exhaustion to severe neurological symptoms. None of the MDs I saw could figure out what was wrong. Several “fired” me as a patient, stating that my condition was in my head and that I was being “noncompliant” and “obviously wasn’t doing what I’d been told to.” At the time I was, but I soon stopped as I began reinforcing my existing knowledge by doing heavy research and study.
My doc horror stories are a mile long, but here are a few of the best:
– When my daughter was born, we chose to deliver in a hospital known for having the highest quality neonatal care. As a diabetic, I knew my baby would spend 2-3 days in NICU, and we wanted the very best. As it turned out, we made a huge mistake. The hospital where we delivered was known for expertise in preemie care, not care of babies born to diabetic women. When I found out they were doing visual blood sugar checks instead of using a blood glucose meter, I insisted they start checking her sugars correctly. The nurse smirked and said she was very accurate and that wasn’t necessary. I put my foot down. My beautiful daughter’s blood sugars became lower and lower. I became even more suspicious when they inserted an umbilical IV because the docs where we delivered my son had put my son’s IVs in other locations and said it’s dangerous to use an umbilical IV on babies born to diabetics. They were right. One day I arrived at the hospital to find the entire staff huddled over my daughter’s isolette. She had a huge black spot on her thigh. One of the nurses had allowed an air bubble through the tubing of her IV that had blocked a blood vessel and shut off the blood supply. The tissues in her thigh were dying. Through what can only be called a true miracle of God, the circulation returned (after I laid hadns on my daughter & prayed) and she was fine. The hospital finally called in an expert from another hospital and asked him to consult on my daughter’s case. This doc pulled my husband aside and explained that the docs at this hospital were trying to control my daughter’s sugars to adult levels (impossible in a newborn) by reading books about adult blood sugar control. Criminy! If you don’t know what you’re doing, wouldn’t you call someone who does?!? I still have to try to stay calm when I think about my daughter spending 15 days in NICU (over Christmas & New Years, I might add) because they refused to ask for help. The doc added that the IV was placed in a way that was causing her little pancreas to pump out insulin non-stop, thereby creating lower and lower blood sugars in spite of constant infusion of glucose. He gave up the shield of protection docs usually use to protect each other and told my husband we needed to get my daughter out of there as soon as possible. I went in the next day breathing fire, needless to say. They removed the IV and started treating her the way they should have from the start. She was out of the hospital in 2 (TWO!!!!!!) days. We would have sued, but they did everything possible to make that difficult. The charges alone to get copies of her records would have been close to $1000, which we didn’t have. They did write off our entire bill, which was more than $30,000 after all the co-pays. That was an admission of guilt. Today I’m just glad that no other babies will have to go through what my daughter did because they were able to learn from her case.
– Endocrinologist with an incredibly condescending attitude told me that blood sugar control “isn’t rocket science” and that my blood sugars were out of control because I was lying about how much I was eating. I was diagnosed with diabetes at age 2 and (until the last few years) was always a “brittle diabetic.” At the time my thyroid levels were out of whack, which directly affects blood sugar, so his condescension and rudeness were not only inappropriate but were thinly masking his lack of knowledge. Same endo told me that hyperthyroidism NEVER causes weight gain and that, again, I was lying about how much I was eating. 20% of hyperthyroidic patients have blatant weight gain. This guy was an idiot. Needless to say, I walked out AND complained to the head of the department. The endo in question went into research shortly thereafter. Good move. LOL
– Not once during my entire illness did anyone acknowledge the fact that I had symptoms of hypothyroidism in spite of having normal blood levels. Nor did anyone ask about my adrenal function. When I started being my own advocate and insisting specific blood tests be run, I was often fired as a patient. (Please know I was consummately polite in my approach. I was fired because they didn’t like to have a patient who didn’t regard them as gods and because they wanted absolute control and did not want the patient, me, to be part of a care team.) Once I began treating my thyroid & adrenals naturally, I recovered within a year. I know I would still be in bed with horrific neurological symptoms if I hadn’t taken control of my own health care.
Thanks for offering this opportunity to share horror stories. I have many more, but these are the biggies.
It took me dozens of doctors before I was diagnosed with the complex, misunderstood illness Lyme disease. But even more infuriating was when my child, who has multiple allergies, was ignored with even the most obvious symptoms, by just as many physicians. She began developing patches of severe eczema at age 2, and even before that would break out in a rash after eating certain foods. Since food allergies affect almost everyone in my immediate as well as extended family, I knew the signs and begged countless pediatricians, allergists, and even dermatologists to test her. I was repeatedly told the eczema was not due to allergies and that she was not allergic to foods. The most I got out of it was skin testing, and with her severity of eczema, that was highly unreliable.
Finally when she was four, she was exposed to something in her room. Her eye swelled to the size of a baseball and her breathing became a horrible rattle. I rushed her to the ER where they confirmed anaphylaxis – and I was livid. She was so allergic to whatever it was she’d been exposed to that her SKIN BROKE OPEN AND SEEPED, like she had poison ivy everywhere. Disgusted, I went back to her pediatrician and demanded something be done (as I had many times before). That’s when I first heard of the RAST test, which could check what she was allergic to through a simple blood sample. My only thought was why in the world this child had lived with these allergies and been passed from doctor to doctor for two years with all the obvious symptoms and not one of them could help her until she almost died. Her school had even called a conference with us, thinking she was being neglected because of the very obvious severity of her skin and allergy problems. They were shocked and understood my frustration with not yet receiving a diagnosis. Everyone could clearly see that my daughter was suffering terribly.
When her RAST test came back, it was the worst the doctor had ever seen; my daughter showed severe allergies to wheat, milk, soy, peanuts, and eggs, as well as many environmental triggers. Never again will a doctor tell me I don’t know when something is wrong with my child.
Hi! Found your blog through RawHealer on Twitter. I am a 25 year old, raw, vegan graduate student with RSD. I keep a blog of my journey and also wrote a guest blog post for crazysexylife.com about overcoming chronic pain:
http://crazysexylife.com/2009/overcoming-chronic-pain/
I have many horror stories, particularly about pain management doctors who refuse to do long-term opiate therapy for an illness that requires it. I have done the nerve blocks, the ketamine infusions, you name it. My doctor is threatening to rip my pain meds away in a few months to scare me into getting a spinal cord stimulator. That is where he makes his money. I am a waste of his time and money unless I get one. He’s a sick, arrogant man. I am on the search for someone new with my father’s help (worked in health care his whole life), but they are all turning up the same. We are now going to travel to another specialist who works specifically with pain management through meds for my illness.
.-= Maria (Tough Cookie)´s last blog ..Toughness Is In The Soul And Spirit + Pictures! =-.
Oh, basically how I dealt with it was I allowed myself to be shocked and angry the first time, I expressed my feelings to my support system, and then we took immediate action searching, researching, talking to the doctors themselves to try to find someone who will partner with me to manage my illness so I can continue my masters degree and go on for a Ph.D. That is not a small goal, so I truly need to find someone willing to invest in me and my success. I need someone who is for me, not against me. Unfortunately, I need my refills, so I continue to see him every four weeks until I find a doctor who will partner with me. Now, I write him off when I go so he doesn’t upset me. I listen to his babble, I grab my scripts, and I go unscathed. It’s only a matter of time.
.-= Maria (Tough Cookie)´s last blog ..Toughness Is In The Soul And Spirit + Pictures! =-.
I’m very glad and thankful I haven’t had horrible experiences in this regard. I have had doctors and specialists who weren’t up to snuff… and I tended to go to them anyway because I didn’t want to have to tell my story over and fill all the paperwork out again. Sometimes it just seemed easier to “cop out” and pretend like it was going okay. I don’t have enough gumpshin to actually tell them what I think about their practices, so I just stop going to them eventually when I know for my well-being it’s the best thing I can do. And it always is. I am finally learning to stand up for myself more and that I have to be more pro-active. So even though my docs aren’t nearly what I wish they were, I know many have it much worse.
.-= Rochelle´s last blog ..Near Pass Out and Definite Freak Out =-.
my terrible medical malpractice doctor (and lawyer)story: (synopsis) https://www.youtube.com/watch?v=R12rJd7BlvU&feature=youtu.be
(fuller version: http://www.experienceproject.com/stories/Want-To-Tell-You-Abut-My-Medical-Malpractice-Experience/2879872