We’ve all been there, struggling to understand why a doctor seems unwilling to treat us, and it feels like the only reason is because we have fibromyalgia. Why does it often feel like doctors discriminate against us because we have this illness?
The easy answer is to believe that it’s because they don’t think our illness is real – and in some cases that may be the case. But, there may be more to it than that.
A 2016 study examined the perceptions of doctors towards patients with fibromyalgia.
233 Rheumatologists, in Japan, with a history of treating Fibromyalgia patients were evaluated via multiple questionnaires about their perception of patients with Fibromyalgia. A past study showed that doctors viewed Fibromyalgia patients as significantly more difficult than patients with RA.
A Spanish study showed that physicians perceived Fibromyalgia to be primarily Psychological in nature, and hard to control. This study examined the question of why doctors are reluctant to treat Fibromyalgia patients.
The Good News: Just over 44% said they would welcome more Fibromyalgia patients. While most expressed a hesitation to accept new Fibromyalgia patients, it was not because they perceive us as “difficult patients” but because they feel inadequate at helping us.
Doctors are reluctant to treat #Fibro patients. The reasons may be a bit surprising. Share on XThe Bad News: The primary reasons that the 55+% of doctors who would not see FM patients their prime reasons for not doing so were (in order)
1. It would be better for them to see a Fibromyalgia specialist – 19.5%
- This is the best answer they can give and it boils down to they do not feel confident in their knowledge and understanding of our illness. And, that’s OK. No doctor can know everything about every illness. This is why there are specialists. Unfortunately, there aren’t enough fibromyalgia specialists, but I do believe the number is growing.
2. It’s a Psychiatric disorder – 14.4%
- These are not the doctors who don’t think fibromyalgia is real, they just don’t think it’s a physical ailment. Thankfully, science is continuing to prove that it is actually a physical ailment, most likely neurological. It might be all in our head, but not in the way these doctors think.
3. It takes too much time – 14.1
- As costs force doctors to spend less and less time with their patients, it becomes more difficult for doctors to handle chronic illnesses, especially ones that don’t have a set treatment plan. This brings us back to number 1, we are better off with a doctor who is focused on our illness.
4. Too many are “difficult” – 13.5%
- My guess is that this perception comes from their inability to treat fibromyalgia patients as a unit. Rather than accept their own limitations (as doctors in the next group are able to do), they would rather blame us. Of course, that’s not to say that some of us aren’t difficult, I know I have my moments.
5. Not confident in the treatment – 12.9%
- I would so much rather a doctor admit this up front and refer me to someone they feel more confident in than to take on something they aren’t confident in. I’ve been on the receiving end of under prepared doctor and it’s not fun. It would only lead to increased frustration for everyone involved, and slow down the time it would take us to find quality treatment.
6. Doubtful that FM is real – 12.9%
- Yes there are still a portion of
doctorsdinosaurs who don’t believe fibromyalgia is real. But, I’ve witnessed that number shrink over the last decade. It’s becoming more and more difficult for them to doubt us, especially as more and more studies show that what we are dealing with is not all in our heads. It’s good that they would rather not see us, because we’d rather not see them.
The doctors expressed frustration at the inability to control symptoms, and patients emotional responses. Their biggest issue taking new patients was the inability / difficulty of controlling the patients symptoms through treatment. Another issue that affected doctors frustration level was “causal attribution” or what the patient (or doctor) believed was the cause of the illness.
Another point of the study was the doctors who consider the primary cause of Fibromyalgia to be “patient internal/psychological factors” have the most difficult relationships with their patients.
Conversely, those doctors who felt that Fibromyalgia was caused by external / medical factors had a much easier relationship with their patients. Doctors also have a more difficult relationship patients who have a history of Psychological disorders.
The good news for us as patients is that we can know that if a doctor has issues with us, it’s not about us, it’s about their perception of our illness. Therefore, it’s important that we find a doctor who has a positive view of Fibromyalgia and does not view it something Psychological.
Related Posts:
- Talking With Your Doctor About Pain
- Are Doctors Biased Against Patients?
- Women: Often “Miss Treated” By Doctors
- 3 Steps to Choosing the Right Doctor
Source:
Homma, M., Ishikawa, H., Kiuchi, T. (2014). Association of physicians’ illness perception of fibromyalgia with frustration and resistance to accepting patients: a cross-sectional study. Clinical Rheumatology.
Fibro Lady says
This is really good information. I enjoyed reading the perspectives of others who are suffering from this chronic ailment. Unfortunately, I am bedridden as I type this message on a device. The extremely cold weather pattern in the USA as of lTe December 2022 is wreaking havoc on my symptoms. I feel like I am on my death bed. Going to the ER will not yield me positive results as I have traveled that road before only to receive medical bills from the hospital and ambulance. In the ER, the doctors are not equipped to treat fibromyalgia. No need to waste hours of time in triage, then undergoing lots of medical tests, receiving morphine injections (waste of time), and discharged being told to follow up with your PC or other specialist.
Tami Jaegel says
I just had two pain management doctors offices tell me at the doctor does not treat fibromyalgia. A Doctor specializing in pain that does not treat pain…oookaaay.
I appreciate the article and thank you for your Insight! I found your article when I Googled ‘why doctors are reluctant to treat fibromyalgia!’ What great timing!
Lee says
Hi Julie, interesting article. I always feel like my doctor says “Oh no, here she comes again” (in his head) each time I arrive in his office, not because I go there often but because he finds my pain and all the other symptoms so complex. He also loves when he can refer me to a specialist.
Julie says
Definitely fits with the finding of this survey. It’s got to be difficult for doctors (who often feel like a god to begin with) to deal with those of us who leave them perplexed. I think for a doctor to deal well with something like fibro they have to really like a challenge and can’t be tied down to a flowchart or obvious answers.
Jyl Milner says
I sometimes feel a bit sorry for the poor doctors – they are trained to think they can cure, or at least effectively treat, almost any disease or condition. We with fibromyalgia must be their worst nightmares!
Julie says
I think we probably are. But, there are a few good ones out there that still get that it’s about more than curing, and they do the best that they can.
Mysti Reutlinger says
Have you heard of Rodney Graham based in the UK? He’s a doctor that treats FM patients but has found that the majority of those patients have EHlers Danlos Syndrome, which is a connective tissue disorder that causes many issues including joint instability. The instability fires the muscles to work more leading to tension and highly painful pressure points. I sure wish that these doctors who believe it’s psychological or not a real illness would hit the books and educate themselves more so people can receive proper treatment.
Julie says
I’m not familiar with him, but I have seen more and more connections made between EDS and Fibro. I think there are likely a lot of connections if people are looking. I agree with you on wishing that more doctors would make he effort to educate themselves. I was talking to someone else who mentioned they were trying to educate their dr about EDS, I think that it’s as unknown now as Fibro was 2 decades ago.
Mysti Reutlinger says
You are absolutely correct in the status (known/unknown). I ws unfamiliar with it until just prior to my diagnosis by a geneticist. My mom had FM, CFS, myofascia pain syndrome, and many other diagnoses in the early 90’s – but was told by many doctors it was all in her head.
I hope through the GBMC and EDNF clinic, we’ll find more about the FM EDS connection and treatment. One of the key components of that center is physician education — something still desperately needed for FM — it seems.
Julie says
So true. Problem with educating anyone is that they have to want to learn. Second is that with drs they have so many things they need to know about that unless they focus on FM patients (or suddenly have a large influx) they have a lot lower “need” to learn it.
Valda Garner says
Actually Neurologists should be seeing fibromyalgia patients because this is a neurological disease with Autonomic, motor and sensory nervous system involvement. It’s going to take more time before the medical community gets it. Most doctors don’t understand Willis-Ekbom disease except for neurology.
Julie says
I had to look up Willis-Ekbom disease (can’t help but wonder why if it’s a disease it’s commonly known as as Restless Leg Syndrome, making it sound like some annoying leg twitches when it’s so much more). I would agree with that, and more of the studies seem to backing that up. It’ll be a while, though, before that transition is made. Rheumatologists are just finally getting comfortable with the idea of treating it, convincing Neurologists that they should be treating it and getting them trained to do so will take even longer.