Stop the patient blaming!

Stop the patient blaming!

In the very same week, I ran across two articles. Both were slideshow lists of poor lifestyle choices commonly made by patients with fibromyalgia and migraine.  They were titled “5 don’ts of fibromyalgia” and “8 mistakes people with migraines make.” It’s not that these recommendations are not accurate. The problem is that the titles of both articles imply that patients who don’t get better have only themselves to blame. It’s called “patient blaming” and is becoming an all too common occurrence in our culture. It’s one thing to educate patients about how their lifestyle choices affect their symptoms. It’s quite another to lecture them about all the ways they can (and do) screw up.

I can. You can’t.

To make matters worse, the suggestions to chronically ill patients are often no different than those offered to everyone as general tips for wellness. There are countless “healthy” people who engage in these bad habits. They don’t have widespread pain, extreme fatigue, or debilitating migraine attacks. It is disingenuous to sit in judgement of sick patients while engaging in the very same behaviors. This attitude is hypocritical at best and abusive at worst.

 

Don’t criticize what you don’t understand.

There is a second glaring problem with these lists. Many doctors don’t even know how to properly diagnose or treat either one of these conditions. Some don’t even believe they are real! Who are they to lecture patients about lifestyle choices? Many patients believe that neither of these conditions can be helped by medical treatment, so they don’t even bother reporting symptoms to their doctors. I’m not suggesting that doctors shouldn’t ever make suggestions about lifestyle choices. I am insisting that only those qualified to diagnose and treat these conditions have any business giving lifestyle advice to patients.

Journalistic integrity

Journalists and editors have a professional and moral responsibility to accurately report the truth. All too often the desire for ratings compels them to create sensational headlines that distort the facts instead. As is the case with both of the aforementioned articles, ratings are bought and paid for through public shaming of the very people they claim to be helping. The articles could have just as easily be been titled, “5 Essentials for Fibromyalgia” and “8 Things Every Migraine Patient Needs to Know”. The more positive version of these headlines would have caught my attention without making me feel like I was failing as a patient.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Healthiculture.com, 5 Don'ts Of Fibromyalgia, http://healthiculture.com/fibromyalgia/newsletter/5donts/5donts-1.php
  2. Marks, Hedy, MPH, 8 mistakes people with migraines make, Healthgrades.com, https://www.healthgrades.com/conditions/8-mistakes-people-with-migraines-make

Comments

View Comments (19)
  • Donna Marie
    2 years ago

    I gave up trying to explain how chronic cluster headaches effect my life. People have told me to stop thinking about them and they will go away. I guess it’s a supposed nice way of telling me to shut up

  • DonnaFA moderator
    2 years ago

    Hi Donna Marie, please know that you’re not alone. Many of our members talk about the difficulties of living with an invisible illness. We have a few articles that may help you explain the experience of cluster headaches.

    We’re always here to share information, support, or just to listen if you need to vent. Thanks for being part of the community. -All Best, Donna (Migraine.com team)

  • Jude
    2 years ago

    I have “Friends” and “In-Laws” that go about thinking and judging me since my fibromyalgia diagnosis. My life has changed since that day. It all came together. After my back surgery, and the pain became wide spread and I constantly felt like I had the flu, everyone looked at me like I was lazy. No one to lend a hand mind you. Just down their nose at me.
    Your article is going to be hand delivered to them – by me.
    But for now, I’m headed back to bed to search for more imitrex. Another migraine.
    Also, could you make these pages printer friendly? It would be nice if you had a printer button set up in one of the corners. I had to print the entire page with all the pictures and use a ton of ink. Just sayin . . .
    – J

  • DonnaFA moderator
    2 years ago

    Hi Jude! We’re glad that you found the article useful, and want to share it to spread understanding. We also appreciate your suggestions on how to improve your experience on the site. I’ve passed your suggestion along to see how we can help make printing more efficient. Thanks for being here! -All Best, Donna (Migraine.com team)

  • RachelM
    2 years ago

    I just find these sorts of articles a bit odd. I have had chronic migraine for almost 20 years and I couldn’t tell you what is going to set off my next attack. Yet there are so many articles and popular online media sources that seem to be able to distill causes and contributors to migraine in 5, 10 etc dot points.

    I also feel that its the life that goes with a chronic and or painful illness that is the hard part. Avoiding triggers, balancing feeling sick and making the right choices, is in itself the experience of illness. So whilst you can ‘make better choices’ the fact that you have to is often as bigger issue as the illness itself. The idea that if you don’t do these 500 things (even if they actually work) you’ll be happy and healthy and have no need to complain, is not actually a solution … its one of the problems.

    I do 5 hours of structured exercise a week, walk 3 Km a day, have a structured sleep schedule, only eat homemade vegetarian meals with no refined or processed carbohydrates, I spend a fortune on medical and complimentary treatments etc etc. And pushing myself from morning to nighttime to ‘live properly’ does NOT make me well. I just have migraines, nerve pain and an extremely restrictive lifestyle.

  • Varvara
    2 years ago

    “The idea that if you do these 500 things you’ll be happy and healthy…is one of the problems.” Excellent and so true. My mom is constantly trying to fit her idea of what migraine is into what my experience of them is. It’s infuriating – particularly because she won’t educate herself (or, listen to what I say) and at least once a week she ‘offers a solution’ that she believes I’m too stubborn to pursue. OMG! Can we divorce our parents?

  • DonnaFA moderator
    2 years ago

    Hi Varvara. It sure is difficult when people won’t extend their empathy around invisible illnesses. We do have a couple of articles that may help your mother to understand. As it may be unlikely that she’d visit the site, maybe you could print them out for her: 10 Ways Migraine is Not “Just a Headache” and 9 Things People With Chronic Migraine Want You to Know.

    Hope this helps her gain an understanding of your experience. We’re glad you’re here and happy to provide information and support. -All Best, Donna (Migraine.com team)

  • DonnaFA moderator
    2 years ago

    Hi RachelM!Thanks for being part of the community and sharing your thoughts.

    I thought this was brilliant, “So whilst you can ‘make better choices’ the fact that you have to is often as bigger issue as the illness itself”. It is, in fact, just another ball to add to the already teeming platter of things we juggle on a daily basis. And like everything else, the experience is so personal, and not neatly categorized. All Best, Donna (Migraine.com team)

  • Tammy Rome author
    2 years ago

    Thank you for your thoughtful reply. Your words will ring true for many, I am sure. They are certainly true for me.

  • MariPerla
    2 years ago

    I confess that I don’t read the posts frequently. In the spirit of disclosure, I also have not tried to modify my diet or keep of log though I get frequent migraines. I was upset and later amused when a friend told me that she had given up migraines. I never asked her how she accomplished the feat of given up such a disabling condition. Best to all of you.

  • Shinetrue
    2 years ago

    I have to say that I disagree a bit. I don’t find anything wrong with articles that try to help people – and I am also a bit tired of everyone being offended by everything. Maybe it is the title of such things that sufferers find the most offensive and if someone knows I am a migraineur and shares something they saw than at least they cared enough to think of me. Whether or not I perceive it as a “lecture” is my issue, not theirs.
    “There are countless “healthy” people who engage in these bad habits. They don’t have widespread pain, extreme fatigue, or debilitating migraine attacks. It is disingenuous to sit in judgement of sick patients while engaging in the very same behaviors.” – I disagree with this also, because everyone’s genetic make-up is different so things affect them differently. take in point my genetics – I make less of the GAD enzyme that converts glutamate to GABA – that means I am sensitive to excess glutamate, MSG and aspartame. does it bug me that others can eat anything they want but may say that msg is bad for you? No.
    What does bother me is the victim mindset – when I hear of someone suffering for 20 days out of the month for migraine yet insists that her diet coke has nothing to do with it and wont try giving it up.
    I do agree that most doctor’s don’t have a clue about migraines. But I have never been lectured by one – just blind offers of prescription drugs. And I agree that the titles of things are getting super silly just to get a click through – another reason to just ignore it and go on with my life.

  • SoFarSoGood
    2 years ago

    Perhaps you’re not accustomed to being threatened with loss of your job for your dibilitating condition. Perhaps, even though you’ve followed all the pointers of helpful magazine articles (and accused of being a prima donna for doing so) you fall into the category of not being able to control the causes of your migraines or your condition. My migraines are completely subject to weather and my neurologist confirms that many who live in my area are similarly affected. I had the pleasure of finding out that my doctor had me diagnosed as having fibromyalgia and NEVER TOLD ME!!! So, if I wanted to follow magazine article pointers, I couldn’t have because I never knew I had the disease in the first place! In the meantime, I thought I was neurotic or just plain crazy. Yes, the medical field has a lot to learn about how to handle patients with chronic illness. Maybe someone should write an article about that!

  • Varvara
    2 years ago

    For me, it’s not that I mind people suggesting or even reminding me that something could be triggering a migraine – in the midst of migraine, I may forget or may not have thought of that one particular trigger out of a gazillion possibilities. I do mind when someone who won’t take care of themselves has the nerve to tell me how to take care of chronic migraine when it has completely altered my entire life and I work hard adapt to those changes
    I’m actually very grateful to have chronic migraine and I don’t feel like a victim (and, most of the comments on this site show that the majority of us don’t have a ‘victim mindset’. We are here because we don’t want to feel helpless). Living with chronic migraine has forced me to dig deeper spiritually – recognizing that no matter what I do to manage them, I’m not in control. Despite coming to terms with having chronic migraine (even though it morphs into something different with each attack and I must adjust my ‘management skills’), I still don’t appreciate when people trivialize and invalidate the pain and debilitation that I (we) experience.

  • DonnaFA moderator
    2 years ago

    Hi Varvara, thanks for sharing your thoughts and feelings. It seems as though you’ve found a place of comfortable acceptance in your personal life, and we appreciate you sharing your view.

    Thanks for being part of the community. We’re always here to provide support and information. All Best, Donna (Migraine.com team)

  • Mr FBP
    2 years ago

    I get this a lot when my better half is frustrated with me for not trying a new diet that she or, more often, her mum have come across online.

    “It’s just a small change for a few months to see if it works”

    “No, it’s a big change, because it affects every meal and involves more label checking, and it’s not ‘just’ a few months, it’s ‘another’ three months”

    And there is a never ending supply of these three month changes for me to try, so that my life potentially becomes a never ending chain of diets I don’t like, or food supplements of dubious benefit (or possible harm). When I refuse to follow them, then it’s then my fault I’m ill. I had to make it clear I will only try a diet of course of action recommended by a specialist headache practitioner or my own GP who knows me well enough to make sensible informed suggestions (and has access to the info from my headache specialist).

    These headlines just become ammunition for those close to us (or any casual acquaintance) to make unhelpful suggestions.

  • Colorado4Now
    2 years ago

    MrFBP, agreed! It is a “never ending chain” of everything anyone thinks could help! Very frustrating. I try to run the endless suggestions through my doctor, who thankfully is very straightforward and a specialist in migraines. Most of them she dismisses.

  • DonnaFA moderator
    2 years ago

    Hi Mr FBP! Thanks for sharing your story with us. It’s difficult when your loved ones are desperate to help.

    It sounds as though you made a sound decision. We have a couple of articles which may help your partner (and her mum) to understand your perspective. They discuss supplements and how we can ensure they are trustworthy and safe: Safety of Dietary Supplements & Herbs for Migraine Prevention; Can dietary supplement labels be trusted?.

    We also have many articles regarding histamines and diet, which may help as well. They are too many to list, but you can find them in this article search for “diet”.

    In the end, the wisest thing to do is just as you’ve done. Talk to your doctor about your findings, and ask him for his recommendations. Thanks for being part of the community! We’re always here to listen and provide support! -All Best, Donna (Migraine.com team)

  • bluebird
    2 years ago

    Thank you!!!
    Over decades I have seen well meaning folks blame patients with chronic and life threatening disease (including Cancer)for not getting better. Often there is a blush of excitement that inspires patients to feel in control of their lives by following a new regime or lifestyle code.
    Given the placebo effect and it’s mysterious power to masquerade as genuine change…and our power to “push through” when desperate to feel better…sometimes fads and healthy changes can seem to make a difference. Sometimes, they are healthy changes but not a fix for the disease.
    However, if any of these patterns of positive thinking or positive eating or asking for forgiveness etc were to do the trick permanently…we would all be on board.
    None of us gets enough of what used to be called “secondary gain” to choose pain over a highly functional life.
    Thank you for this article and your outreach to so many.

  • DonnaFA moderator
    2 years ago

    Hi bluebird! Thanks for being part of the community and sharing your comments with us. We’re so glad you connected to this story! -All Best, Donna (Migraine.com team)

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