When it comes to fibromyalgia and stigma in the medical community I have felt this influence several times in my life. And likely experienced in ways I Wasn’t aware of consciously as well.
Before I was diagnosed and having issues coping with pain I went to a doctor who then insisted I was ‘just depressed’. He put me on an antidepressant which, typical for me and my sensitivity to antidepressants, did not work out well for me at all.
When I was diagnosed that rheumatologist basically said ‘to exercise’ and that ‘I was too young for medication’. And sent me on my way with literally no idea how to manage the symptoms or pain.
After my diagnosis, I had my first experience with fibromyalgia chest pains due to working a summer job as a baker- which just made the pains worse and worse and worse until I ended up in the ER one night. I said to that doctor I knew it wasn’t my heart, due to the long-enduring duration of the pain, but I had no idea what it was and maybe it was due to my fibromyalgia in some way. He said ‘I don’t believe fibromyalgia exists’ and did Absolutely Nothing. I had to go back home to my family doctor who determined I had a pretty severe case of costochondritis which he treated with some heavy-duty medication, put me off work for the rest of my summer, and took six or so months to simmer down.
The fact is, I got used to doctors minimizing fibromyalgia pain pretty damn fast. I also got used to them not doing a damn thing about it pretty damn fast. It was essentially left up to me. And if I failed in ‘self-treatment’ then, well, that was my fault, right? Because that is what society says. Not that woman’s pain should be listened to and treated but that we should find some way to manage it ourselves and if we fail, that’s on us.
How often are people missed when trying to be diagnosed with chronic pain like fibromyalgia?
A recent study found that physicians missed the fibromyalgia diagnosis in 49.6 percent of patients and wrongly diagnosed 11.4 percent of patients with fibromyalgia when they did not meet the criteria. Even though there are an estimated 4 million U.S. adults with fibromyalgia according to the Center for Disease Control and Prevention , there are healthcare professionals who are uncertain the condition exists. This leads not only to misdiagnosis, but patients feeling shamed by their physician who suggest the symptoms are simply psychological.Psychology Today
Where does medical stigma come from when women are being diagnosed with fibromyalgia?
- Moralizing attitudes
- Disbelief as to the reality of pain
- Pain’s invisibility
It has been hell. First, you have to find someone who believes you. (Testimony #135)
Doctors don’t recognize pain they cannot see or diagnose as a specific issue. (Testimony #314)
The stigma is one of the biggest barriers. I have been treated like a lowlife by medical people when I disclose that I have chronic pain and use opioids for it. (Testimony #383)Why are women with fibromyalgia so stigmatized?
I think we all can recognize those statements at one time or another when we were being diagnosed or treated. I did have problems with being believed. I was told it was just depression because, hey, depression is common in women and let’s just ignore that whole pain thing. And yeah, pain is just minimized so much I began to wonder if it just wasn’t as serious as I thought it was. I began to prioritize my migraine management over my fibromyalgia management because they ‘understood’ migraine treatment more. And I fully understood in my pain management, even when I was severely struggling and having serious issues coping, I should never, ever suggest or imply opiates as a treatment- because that would affect their opinion of me.
In this article he discusses how fibromyalgia historically started with stigmatizing themes embedded into it and from there it was difficult to shake them.
Nevertheless, even after the 1990 classification criteria were widely promulgated, a clinical diagnosis of fibromyalgia could raise seeds of doubt and guilt, within both the medical and the wider community. Those awarded the diagnostic label were predominantly women, who were more likely to harbor psychological disorders. They were therefore placed in the invidious position of having to convince others (including their health care professionals) of the reality of their painWhy are women with fibromyalgia so stigmatized?
There really was a time back in the day, and likely still, when few doctors accepted fibromyalgia Existed and those that Did really thought it has a massive psychological component to it and it was somehow ‘all in our heads’, ‘stress related’ or ‘psychological’. I attribute a whole lot of that to the fact that woman’s pain is often dismissed or seen as psychological, minor, or ‘exaggerated’ despite contrary evidence on how women biologically experience pain and chronic pain.
In their analysis of the diagnostic experiences of patients with fibromyalgia, Mengshoel et al. identified moral issues encountered by some sufferers, including their alleged laziness and work-shyness, as well as a failure to recover their health, even after what was believed to be “medically correct” treatment. Asbring and Närvänen noted that physicians used moralizing terms when characterizing such patients as “illness focused, demanding, and medicalizing.”Why are women with fibromyalgia so stigmatized?
I used to hear this a lot and actually I still do. A lot of emphasis is on people with fibromyalgia or chronic pain focusing on ‘sick behaviours’ and so focused on their illnesses they just apparently do not want to get better. I mean, they gave us the right pills so… why are we not Better? We must just be lazy or want to be sick or something like that. There must be some deep psychological Reason for these ‘issues’ rather than the fact that treatment is absolutely pathetic and not effective and our pain isn’t in the least bit managed. Couldn’t be That.
The author discusses the long history of moralization, guilt of the person who has pain, and sin, religion and misogyny that influenced the medical community.
Many women with fibromyalgia find themselves stigmatized through no fault of their own. This can be attributed to the powerful and deeply embedded narratives of punishment and guilt in Western society arising out of its Judeo-Christian heritage, with its moralizing prescriptions for how to live one’s life. These themes are embodied in the etymology of the word “pain” but in current discourse to the virtual exclusion of other connotations found in the ancient Greek tradition.Why are women with fibromyalgia so stigmatized?
I have not thought about it in this context but of course, it is true. With fibromyalgia there comes with it intense guilt that we cannot be what we feel we should be, as productive as we should be, what society wants us to be, what our employer wants us to be… and so on and so on. And often we are perceived to be at fault in some vague way for becoming ill by Not doing the right things or doing the Wrong things. But if Only we did all the Right things we would get better. And we feel more guilt for that.
Disbelief as to the Reality of Their Pain
In their recent metasynthesis, Mengshoel et al. analyzed the negative health-related experiences encountered by patients (mainly female) with fibromyalgia, which comprised expressions of disbelief as to the validity of the diagnosis itself, being seen as the medicalization of psychosocial problems, and the failure of patients to try hard enough to combat their illness, and their “taking a free ride.”
In the rheumatology literature, Ehrlich believed that the clinical phenomena of fibromyalgia could be sourced to the sufferers’ inability to cope adequately with personal social problems.Why are women with fibromyalgia so stigmatized?
The stigma of women in pain has a very long history. And seriously trying to convince a medical professional you are in pain and how much pain you are in, despite the things you do to cope is insanely hard. Sometimes I wonder if the psychological impact they believe is the Cause of our problems, actually comes about due to the fact we endure unmanaged pain and stigma for such a long time it is depressing. It seems pretty hopeless. Because the one place where we would hope to get help is often the place we get very little help. I know my fibromyalgia was completely untreated for about a decade. Up until the medications for it specifically came out- before that, it was just up to me to just endure it and deal.
But, yeah, even with all that often we are seen as not doing enough to cure ourselves, by Everyone. And so often we are seen as somehow incapable of managing stress and that is our ‘issue’… not pain.
The Invisibility of Pain
Obviously what cannot be seen can be doubted. So the aspect that doctors may suspect someone to be faking or malingering are aspects of stigma when it comes to fibromyalgia.
Armentor commented that some women with fibromyalgia were under the impression that others (including their medical practitioners) might see them as faking their symptoms. Both Mengshoel et al. and Juuso et al. documented similar perceptions reported by female sufferers.
Those presenting with fibromyalgia (and other medically unexplained painful conditions) report experiencing these pressures to conform and thus become “worthy” patients in the eyes of their ethically motivated clinicians.Why are women with fibromyalgia so stigmatized?
I don’t know if anyone can relate to this but it is something I did back in the day and still do sometimes, but Really try Not to. I am keenly aware of medical stigma so much that I do not want to be perceived as exaggerating or faking and therefore when I talk to doctors I often minimize my pain or carefully choose my language.
This perpetuates the problem so I try not to do it. But the fact is, I really wanted Some treatment and doctors would totally ignore you or disregard you if they felt you expressed yourself in a certain way. So basically I would conform to what I thought the perfect patient was. And I would follow their recommendations to a T.
Now I am a lot more cynical. I do follow recommendations that I find valid and well-informed. But I also know that misdiagnosis is common. And treatments are not perfect. That a lot of things are left up to me for lack of anything else to do. And most definitely pain management is insufficient and mostly in my hands.
When a study compared Rheumatoid arthritis with a clear
pathophysiology to Fibromyalgia without a clear pathophysiology regarding stigma, treatment and well-being it was pretty clear that stigma affects the well-being of the person.
That isn’t to say we can’t have an effective treatment with a doctor, a good doctor, and effective communication with a doctor. Just that stigma is pretty common through the medical field and common to encounter in various areas and affects our treatment in various ways.
In many ways it leads to stronger advocating on our side for our treatment. It leads to a lot of self-awareness for what we have control over in our own well-being, but also the high expectations of medical professionals and society itself for us to manage our own treatment ourselves and if we can’t how that is somehow our lack or deficiency.
I think we certainly have to be consciously aware of the potential bias and stigma so that when we are blatantly ignored and not listened to we do not blindly accept that doctor’s version of reality and rather seek another opinion where a doctor will actually listen to the words coming out of our mouths and acknowledge the reality we live in. Clearly pain is a complex issue and difficult to treat. But it is not impossible to Comprehend that your patient is actually in pain and has a significant chronic pain problem that needs to be addressed.
While women are more likely to report chronic pain and be open about their experience, they are also less likely to be taken seriously in regard to their symptoms as this study concluded. Being in pain and not knowing the cause is scary; reaching out for help that first time can be nerve-wracking, and being met with disbelief can be emotionally damaging. This initial experience of stigma often makes women reluctant to persist in seeking treatment for their chronic pain, for fear that they are going to be dismissed, or that the visit to the doctor is actually going to make their pain and stress worse, as this study explains.Pathways
The more research on fibromyalgia that comes out that confirms how it affects us biologically and how it specifically exists in the body the more we can eradicate doctors that refuse to acknowledge its existence. But without specific diagnostic proof they can point to when diagnosing someone pain itself remains rather invisible and therefore quite open to be doubted… and with women, apparently the bias suggests not only doubted but often we are seen as exaggerating our pain leading to quite a bit longer for a woman to be diagnosed and poorer treatment of that pain.
Often women’s symptoms are psychologized, meaning that they were thought of as ‘all in the head’ by doctors, as this article on female fibromyalgia patients found, “Stigma consisted of questioning the veracity, morality, and accuracy of patient symptom descriptions and of psychologizing symptoms.” This often leads to chronic pain being misdiagnosed as a mental health condition.Pathways
We are more likely to be given sedatives for our emotional state rather than painkillers like men. We are less likely to be sent for further tests and treatment which delays our management of the pain. It often takes several years for women to even get their chronic pain diagnosis. Men have a significantly higher rate of being referred to pain clinics and rehabilitation for their chronic pain (it Only took me over three decades to be referred to a pain clinic… so not That long, eh?)
It is a bias women in chronic pain have to be consciously aware exists because it directly affects our treatment or lack thereof, and therefore we have to push a great deal to get effective treatment management for our pain in many cases.
I have an exceptional doctor these days but, well, that took quite some time to find. Nevertheless, I am quite glad I have found her.