The Impact of Not Being Believed
"I just wish someone would believe me!"
How often have you said or thought that? Disbelief or skepticism about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is something most of us are all too familiar with, and if you've experienced it yourself, you don't need a study to tell you how painful it can be.
Wouldn't it be great, though, if someone would tell your doctors how detrimental it is for them to dismiss your pain? I was delighted to see a chronic pain study out of Wales that does tell them. (While this study was only on chronic pain, I don't think it's a stretch to say the findings would apply to fatigue and other "invisible" symptoms.)
Of a group of 8 people in the study, only 2 said they had no problem getting health-care workers to accept their word on pain, and those two people also had visible disabilities. Stories from the other 6 included doctors denying pain medication, shouting at them for taking more pain killers than prescribed, and even blatantly saying, "I don't believe you," and walking out.
Those actions left them with feelings that (no surprise to us!) included anger frustration, isolation, depression and thoughts of suicide.
The study concludes that doctors and other health professionals just need to believe what their patients say when it comes to pain, bringing up a definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain nursing consultant: "Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does." The logic is simple, but the implications to our treatment would be profound.
The final paragraph sums up what practitioners can do to avoid all these problems:
These simple means are: active listening; being non-judgemental; accepting the pain experience as credible as recounted by patients; and thus showing to patients that the relationship is based on caring and empathy. While these may be considered mundane and accepted practice, it is vitally important not to overlook the impact they have on patients with chronic pain.
Personally, I've been very fortunate. While I've seen several doctors who had no clue what was wrong with me, the only ones who've discounted my pain have been an ER nurse and a dentist. What have you experienced? How have you dealt with it? Have you found any solutions? Please share your stories by leaving a comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.
- Read the full study. (Free registration required.)
Comments
I can identify with being one of those people being told it is all in my head and walking out leaving me in tears in front of my daughter and granddaughter, feeling isolated, hopeless, rejected and millions of other negative emotions. I had seen him for a 2nd opinion and he hadn’t even received and of the information about my work up or knew any results. He simply just went by what the other doctor had told him, which was she thought I was “dependent” on the pain meds and needed to come off of them. The reason she said I was dependent is that some days I would take 5, sometimes 3, sometimes 4 and i was told to take 4 a day. My theory is, my body knows when I am experiencing the pain so why should I take the same amount when I was just started on them and if it were not enough, why wouldn’t she see herself through to increase this med or at least see me in her office to discuss it. She said I broke my contract because I asked what the fibromyalgia clinic consisted of and didn’t sign it until I knew what I was being asked to do. I wasn’t trying to be difficult, but since she was so serious on her end, I figure I better be serious on my end as to what I was committing myself to and what was wrong with her giving me a treatment plan? They know they hold the power and they like flaunting it. It was very devastating for me as I was also going through a separation from my husband and a mental breakdown. I couldn’t believe how cold she was and how much colder the 2nd opinion doctor was.
I have CFS, and have had my share of people (and doctors) who have disbelieved or minimized my symptoms. However, I feel compelled to write in defense of what may feel like cruel questioning by some doctors. There are people out there who do “shop” doctors to accumulate pain medications, sometimes with devastating consequences and malpractice suits. A friend’s husband managed to have several docs prescribe different pain medications which should not have been taken together. Sadyly, one evening his heart gave out and he died (he was in his 40’s); the autopsy says he died because of an involuntary overdose/reaction between all the meds (think Heath Ledger). Unfortunately for us, with our “invisible” illnesses, many doctors become suspicious, but I don’t believe that it is simply out of cruelty.
Docots are mainly interested in treatment and improving conditions. The key is to have a doctor who actually qestions a CFS/FM patient about their residual capacity. What can a CFS/FM patient actually do or perform on a reliable basis. It is not about what they can do, or the level of pain, per say. It is about their residual level of performance. This makes the difference between getting disability or not. It also better informs the doctor of the severity of the illness. Today many Doctors think the condition is real but they just don’t understand it and ask the vry simplistic question “what is your pain level today?” After 20 years I could just about tear my heair out when I hear that question. My suggestion is to approach to provide a sample of the daily activities that can performan on a daily basis – and then send a sample such as this to him on a bi-weekly or monthly basis. Document. If you could document all of your activities everyday than you could hold down a full or part-time job. If not, then a disability application should be considered. Don’t let the placebo effect of treatment steer you away form telling the Doctor the truth.
Adrianne: Why has it taken 4 years for anyone to consider the Assay test you mention in this newsletter as a diagnostic test for fibromyalgia? I will beleive it wehn I see it.
I can’t believe you would believe someone can spend all that time documenting. As a single mom with both FMS and degenerative arthritis who is forced to work full time I can tell you that there is no time or energy to document anything! By the time I get home I am most often tearful, swollen, headachy and nauseaus. My personal life is a humiliating mess so I dont have company. I cannot keep up the house or yard. Work is difficult with pain, fatigue and brain fog but we would be homeless on disability. I have had many doctors discount the pain. I had one tell me to my face fibromyalgia did not exist. I have had a diagnosis for 15 years but my current health system still uses the old out dated “psychosomatic disorder”. It is naive to think that doctors are all warm and fuzzy – many still do not believe in something they cannot see – and many are heartless
Anne,
I wish I knew why it’s taken so long for this or any other viable diagnostic test. Here’s hoping we won’t have to wait much longer!
I agree with you Anne, about hearing “what’s your pain level”…it makes me cringe. It’s difficult enough to describe our pain, but we know we hurt!
I was almost 50 when I was dx’d with fibro. Having never heard of it before, the first thing I did was researched it’s symptoms. Guess what? I learned that I have had it since I was a teenager…all those times they Drs. said it was “fibrocytis; chostrocondritis; etc.”. Even as a teen I suffered from migraines, balance disorders, a variety of aches and pains and depression. I sure wish they had told me sooner…it would have saved me from thinking that it was ‘all in my head’ after all.
I was fortunate, in that I had a Dr. who knew what fibro was and told me about it. The only one who seems to have questions about this illness is my ortho (when I mentioned it he seemed unconcerned and looked at me strangely). Funny – as the hospital where he did my surgery includes ‘fibromyalgia’ as a question on it’s entrance forms.
Keeping a journal of daily activity can become very, very useful if one should attempt to obtain soc. sec. disability benefits. It takes little time to notate how you feel at the end of the day.
I’m waiting on more research to be done and when they finally determine what causes fibro/ME…we can all rejoice.
I have to say – I must have been one of the lucky ones. I couldn’t believe the stories I kept hearing about “no one believes me” — I thought these folks were exaggerating, I’m embarrassed to say. My doctor was the one who brought up the diagnosis as a possibility to me, initially, to explain the symptoms I reported. No one I disclosed the information to ever responded to me as if they didn’t believe me.
So, I admit, I just thought the naysayers were some extreme fringe minority, and that it wasn’t really a problem.
Then the NY Times article broke.
THEN, the ombudsman backed the reporter up!
That’s when I realized this really was still a problem. It offends me mightily that in the 21st century we’re still arguing about whether something is a real disease, years after it’s been established by the medical profession as such, simply because some folks want to think it’s psychosomatic.
And that, I believe, IS what’s going on. They want to believe it’s “all in our heads” because otherwise, pain can strike anyone, any time, for no discernible reason that can be identified on a body scan or MRI or X-ray.
We can accept cancer pain because we see the tumor. Fibro produces nothing to look at, so we automatically assume it’s suspect.
That’s just outrageous to me — that otherwise intelligent people honestly believe this insanity in the 21st century.
How naive I was.
I have been fighting suicidal ideation for a very long time due to family members and others not believing me or not understanding enough to care. When your body and your life is falling apart and nobody is there for you, it is devastating beyond belief. Only by meeting others who suffer from these disorders can we ever hope to have true support and understanding.
I just met a new psychological therapist. My sister has urged me to go into therapy to deal with the problems of having CFS. I spent part of the hour trying to convince him that CFS is not a process of my subconscious mind making me sick. It is a physical disease. I realized that he had read “Chronic Fatigue Syndrome” on my paperwork and thought he knew all about it — chronic fatigue is in one’s head, right? I will NEVER use the name “Chronic Fatigue Syndrome” again. I will from now on use “Myalgic Encephalitis” although I think “Chronic Neuroendocrineimmunologic Disorder Syndrome” states it better. When will the disease-name-controller understand that the CFS name is in itself a depressing message of disbelief to doctors as well as the public?