Wednesday, 19 October 2011

Sticks and Stones: A response to the New York Times Article, "Ailment Can Steal Youth From the Young"


I tend to shy away from political discussions on this blog.  It's been a very deliberate decision on my part. Privately I have certain political beliefs, and there are issues which are dear to my heart.  But this blog was created as an outlet to process the day-to-day struggles of living with chronic illness.  My own personal therapist in the shape of a keyboard and 'publish post' button.  But of late I have become increasingly frustrated by the portrayal of Dysautonomia in the both the media and peer reviewed medical journals.


A recent article in The New York Times, was heralded as a giant step forward in raising Dysautonomia awareness. A relatively unknown and under recognised disorder, Dysautonomia diagnosis is notoriously difficult, and treatment defined by trial and error. Unfortunately, what began as a great opportunity, has upset many patients. The last few lines in particular,

"Don't let the disease rule you.," Dr. Fischer emphasized. "The messages of how you feel are not reliable. You have to make your mind rule your body".

are as nails on a chalkboard for many of those who live everyday with Dysautonomia.

I will give Dr. Fischer the benefit of the doubt, and believe that his overall intention was to suggest we try to participate in life as much as possible. A course of action known to promote mental health and improve coping mechanisms. Managing stress is important, particularly when your autonomic nervous system (ANS) is already malfunctioning, as it is known that increased stress equals increased symptom severity. But the idea of the mind ruling the body, in a physical disease, simply perpetuates the myth that a) Dysautonomia has a strong psychological component and b) that all we need is a positive attitude. Can I control my blood pressure and heart rate by simply willing it? No. Though I, like many other patients, truly wish I could. But the question arises, would Dr. Fischer say the say such a thing to a person with diabetes or Parkinson's disease? I think not.

This comment comes on top of The Grinch Syndrome controversy, following a publication by prominent researcher, Dr Levine. Dr Levine concluded that all cases of Postural Orthostatic Tachycardia syndrome (POTS, a common form of Dysautonomia) were due to deconditioning and small heart size. His solution, all patients need to follow his exercise program. Those who didn't recover simply didn't exercise enough. All accompanied by the proclamation that he had found a 'Cure'. Whilst the methodological failings of the study, including its overreaching conclusions, are well known, this study persists thanks to Dr Levine's prominent reputation in the field, including his work with NASA. Unfortunately, this study is quoted by many well meaning medical professionals, despite many patients being highly physically active prior to illness and continuing to have normal heart size, long after diagnosis. (This is not negating that exercise is a vital part of the overall treatment of Dysautonomia. But it is not a 'cure' for all, and must be tailored to each individual patient).

It would seem that these practitioners, despite their best intentions, have lost sight of the patients they are supposed to be treating. Naming a disorder after a Dr Seuss character is not cute, it is patronising. Not only that, but this research negates the fact that there are multiple well-recognised forms of POTS and Dysautonomia, all of which have different underlying pathologies. There is not a one sized-fits all diagnosis, or treatment.

Whilst the physiological symptoms of Dysautonomia are difficult to live with, it is the way these impact on a patient's day-to-day life that can be most challenging. Many patients have had, and continue to have, a difficult and demoralising experience. Patients are told that much of what they are experiencing is psychological in nature and continuing illness reflects low motivation. This can be devastating.

Both of these doctors know the stigma attached to Dysautonomia. Many patients have fought for years to finally find the correct diagnosis. During that time they have been told "that it's all in your head", "it's anxiety", or "it's depression". There are helpful comments from family and friends, and not a few medical practitioners, that we "simply need to get out more", "be positive", "exercise", "eat healthy", the list goes on and on. These experiences leave a mark on those who have been through them. For many patients these remarks persist long after diagnosis.

Dismissal and disbelief are part and parcel of Dysautonomia. Heard frequently enough, patients begin to internalise those feelings, even when they know the truth. Patients frequently experience an overwhelming pressure to prove their illness, both to those in their life, and medical professionals. As such, the outrage of patients when comments such as this are published, is understandable.

I know from personal experience, that there are many doctors who are quick to dismiss when they are unable to find a cause for reported symptoms. After describing my symptoms to one General Physician, I was told, “when a woman your age presents with these symptoms it is always in her head”. Thankfully, with a background in Neuropsychology, I knew he had not followed any accepted testing methodology and therefore drew erroneous conclusions. Notwithstanding, I was left deeply upset. That distress turned to anger which spurred me to search further and finally find a doctor who could provide me with a diagnosis that fit the symptoms, and push for appropriate treatments. But I often wonder how many patients simply accept such a diagnosis and blame themselves when they don't get better.

I can push myself to make an appointment in the city, 45 minutes away. But not without extensive planning and preparation. By the time I am home I am exhausted and highly symptomatic. Quality of life becomes a moot point. Life is defined by periods of increased symptomatology punctuated by pushing yourself beyond your limits for a certain event. This hardly reflects an effective treatment option.

Social outings and participation, are vital to mental well-being. It is easy to become so overwhelmed by illness that we catastrophise, and believe we are unable to do anything. Simply leaving the house and all the potential situations that may occur (eg, fainting or vomiting in public) becomes an occasion for increased anxiety. Few patients would deny this. However, in reality a simple outing, for example, going to a cafe, can lead to an exacerbation of symptoms post-event. For many patients, this in turn leads to a lengthy recovery period often measured in days, and for some, weeks.

In psychology there is a phenomenon known as the Primacy and Recency Effect. This theory tells us that people recall the first and last things they are told, with the intervening information recalled with less clarity (regardless of how informative it may be). In the case of this article, most would take away that the patient discussed was very ill, but the fundamental answer to treatment is related to attitude. Which only serves to perpetuate the myth of a psychiatric aetiology. We are also drawn to personally salient information. For patients who have struggled for recognition this conclusion sums up the struggle they have faced, and for many, continue to face. For those who doubt the legitimacy of the disorder, it confirms their pre-existing opinions. Especially coming from an expert in the field.

I am sure that Dr Fischer did not intend to cause harm or distress by his statements. And it may be a question of simply how the journalist chose to frame the discussion. But it behoves medical professionals to stop simplifying complex disorders. Especially, when most will admit that little is known about the mechanisms of the disorder and the ANS as a whole. Additionally, this article only addresses POTS in an adolescent, with a specific identifiable aetiology. Even less is known about those in the older age groups. Questions of treatment, recovery or prognosis are often left unanswered as little to no data exists.

Patients are vulnerable and frequently unable to advocate for themselves. As such we rely on those who are supposed to provide us care, to advocate on our behalf. And that includes thinking about the potential impact of the language they use both in the public domain and medical journals.

Sadly, whilst much of this article is informative and aides in increasing awareness, this comment from a prominent specialist in the field merely serves to perpetuate unhelpful myths. Dysautonomia is a highly complex disorder, varying in aetiology, treatment, severity and impact on functioning. It has clear, measurable physiological and pathological markers. Its impact on patients and their families can be devastating. We need an advocate, not minimisation and simplification. And "make your mind rule your body" does not fulfil that brief. The medical covenant of "First do no harm", is thought a central tenant of medical practise. It is time to apply this practice not only in the treatment of patients in the doctors' rooms, but also the way disorders are discussed in the media.

Michelle

Update: a revised copy of this post was was accepted and published in ABC Ramp Up and arm of the ABC News Network, on 21 Nov 2011.

30 comments:

  1. Thank you Michelle, I agree with your article 100%. I too have POTS and EDS. I luckly have a Doctor that understands my illness as much as possible with the data he has. I was shocked as I read the last line of the article you are refering to. I agree that it is NOT simply, mind over body. With out meds to lower my heartrate I wouldnt even be able to get up to go to the bathroom. I am also 34 and have had this illness since a child. Although I was not diagnosised until I was 29 I had the symptoms since before middle school. I have yet to "grow out of it." as a matter of fact I am progressively getting worse. More and More systems of my body are being involved. I am also, as the people who know me would say, "the queen of pushing myself" I can only do so much and when I do I also have to prepair and I pay for it afterwards. My quality of life is very poor. I have almost died more than once from this. I was in cardiac ICU for 2 weeks because my heartrate was 21 and my blood pressure was 200/100. This is when I was diagnosised because the doctor knew their previous diagnosis of SVT was no longer valid with a heartrate in the 20s. I was treated for SVT for 11 years and didnt have it. I can only hope and pray, that doctors and medical staff will continue to learn as much as possible about this illness and not to minimise it anymore. Having POTS is debilitating not matter what I do. I hope your article can be seen by as many doctors as possible and I hope they will do their best to follow up with as many people as possible with this illness. Knowledge is power. Thank you again for speaking out on behalf of us POTS PATIENTS:)

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  2. Good for you for being so eloquent and well-researched and PC! i'll be writing to them, for sure, but i doubt my reply will be this pretty. Silly POTS, stealing my brainpower.

    i myself cannot get past the simple urge to smack the man. But seeing as smacking can be taken as a form of exercise, maybe it really would make me feel better...? ;)

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  3. mmmmm-mmmm. You go girl! You say it soooo well. I 100% agree. Shout it from the rooftops!

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  4. Michelle, a work of art, as usual. I must say, I stopped going to doctors about 18 months ago and just get by as best I can. It was bankrupting my family and I never found one that knew a single thing about what I have going on, much less what to do. Mostly just pushing anti-depressants and beta blockers. I am so sorry that you are so sick but I am so glad when I read about your docs, sounds like at least some of them know their head from their arse. Excellent post, well said, hope you are feeling better :)

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  5. It's not political, it's simply correct. Those last few lines cast doubt over the entire article. Are those with POTS debilitated or aren't they?

    I have EDS and POTS as well, and I have heard the "Push through it!" line and all its variations more times than I can count.

    If doctors are feeling confused and overwhelmed by the many causes of and lack of treatments for dysautonomia then they should put their noses to the grindstone and stop with this shameful "blame the patient" behavior. They aren't fooling anyone but themselves, and unfortunately now, the public.

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  6. I have to agree with you Michelle. Thank you for standing up for us. Now we're all going to have to worry about the very thing that we were hoping advocacy and awareness would change: people who think that this is all in our heads. The depression/anxiety portion of the article is inaccurate too. Kudos to you for mentioning the Primacy and Recency Effect. As a psych major, I salute you!

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  7. I should point out that Dr. Fischer is a pediatrician which is part of the reason for the article's limited applicability.

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  8. Anon - thanks so much for you lovely comment. I think your story like that of many of us demonstrates how little the article addresses the complexity of dysautonomia. Whilst I understand that there are many patients who have milder cases, or recover. For many it is a life long management issue, which involves individualised treatment plans. For many despite all the best intentions and positive thinking our bodies do not respond. Given how many people there are on the forums with similar histories, it seems we may not be such a minority.

    Buffy - It's so hard to try and keep calm when these issues are so personal. I think we can have a voice in this matter, both with the doctors and the media.

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  9. Susan - thanks babe. I think there are many 'disgruntled' patients around who are simply tired of the same old line.

    Angela - it's sad that we are forced to choose to not see doctors for our financial and mental health. This is such an important issue. When you have a medical condition you expect that a doctor will be able to help you. I understand that our cases are frequently complex, and that the medical systems around the world are not set up to deal with complexity. But there has to be a way we can all get a correct diagnosis and adequate care. Even if they can't 'fix' us, be honest, don't blame us or leave us hanging. Good support and rapport can go along way in managing this and other chronic complex conditions.

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  10. Yvette - so true Yvette. If we are complex, do more research. Stop blaming patients for not getting well. I understand the politics and financial aspects of research. But whilst they twiddle their thumbs, we live with this every single day of our lives, with little to no respite. Makes it hard to keep a level head at times.

    Anon 3 - Go psych majors! There were a few issues besides the final comments that were problematic but I decided not to cover everything. I don't think either the Dr's mentioned or the journalist had any real malice towards patients, but they do need to be reminded of the power of words to influence attitudes. And in this day and age this information is permanent. For every negative comment or article we need 10 to counteract. That's exhausting. PS Thanks for reminding me he's a paediatrician, I forgot to put that in.

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  11. Thank you from the bottom of my broken heart and body.

    Jane

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  12. I LOVE YOU!!! That was so perfectly said... you have done us a huge service by writing this, I have felt this way for SOOOO long! You are AWESOME!!!

    Stacy Reed :)

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  13. It was my son, Patrick, who gave the interview to Jane Brody in the article. I hope you all know that I take this condition very seriously, and that he only did the interview to increase awareness about the condition, not to further minimize people's suffering. The focus of what we said to Ms. Brody was on teenagers because that is the situation we are in. I know the teenage version is totally different from the one that comes after having a child (for example). Even among teenagers, I know how lucky we are, and am grateful every day that huge amounts of salt, fluid and exercise are helping him. He lives with at least some symptoms most days, but it is way, way better than it was two years ago. I am really sorry this article upset people, but I also do hope that the overall article can still be helpful for teenagers that have this. BTW, when we got home from Mayo with the diagnosis, I was interviewing a potential new pediatrician and he told me he simply did not agree with Mayo, and that my son was depressed. I asked how that would explain blue, swollen feet and the miraculous abatement of symptoms with enough salt. He just stubbornly told me he was right, and everyone else was wrong. People can be idiots, and this condition seems to bring out the latent idiocy in many of them. There is an almost endless amount of education that needs to be done, and I do think it will often be at least partially inaccurate or incomplete, but we still need to try and get the word out.

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  14. Jacqueline - thank you so much for taking the time to write. Please, don't think that I was upset by either yourself or your son Patrick, as this is in no way the case. Which is also why I deliberately avoided discussing his involvement in my post.

    As a patient myself I know it takes courage to share your story and I congratulate and thank you both for taking the time to do the interview. As a parent of a child with health difficulties I also know how challenging the the process can be both physically and emotionally for you both. I should also add that I, and I'm sure other patients would concur, that it is fantastic that your son has seen improvements and it is something that we would all hope to experience in the future.

    Your experience following your trip to Mayo highlights what I was discussing in my post. This condition does seem to bring out the 'idiocy' in people as you say, and it takes little for them to dismiss patients' physical symptoms as purely psychological in nature. It is the overall way the condition is being discussed in both the media and medical settings and how that translates to the way patients are treated by both the medical community and family and friends which is the issue. That is not to say that the article didn't contain some great information, or that we should stop trying to get the message out. If anything it shows how much more work we have ahead of us and it is only through patients advocating for themselves, such as your son, sharing their story that we'll get there.

    I think for many patients it was the last statement that hit a nerve. As I said in my response it may be either a 'misspeak' without clarification by Dr Fischer, or the way the journalist framed the article, or a combination of the two. Hence I give Dr Fischer the benefit of the doubt. The issue is the emphasis placed upon the 'mind over matter' idea which for many patients has been used to dismiss their experience or used to blame them for not getting better. In a sense that one comment is simply a "final straw" for many and in no way a reflection upon yourself or your son.

    I am sorry if my response has caused you or your son distress as that was never my intent. I wish you only the best and am thankful that you chose to share your story, which as I said is an act of courage. My issue, and I would suggest for many others, is with the medical system overall, and not with fellow patients. Please feel free to contact me again should you wish.

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  15. Wow, so well said -- thanks for sharing and posting this, I learned stuff!

    And I totally agree with you, while the Dr probably had the best of intentions, and yes everyone should strive to participate in life, his wording was clunky and insensitive at best. I hope he reads this!

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  16. Brahm - Thanks. I know a lot of upset patients were going to contact him and the NYT about the article so hopeful he'll re-evaluate his approach next time. It's just frustrating.

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  17. Well put Michelle. I couldn't agree more. It is beyond frustrating when journalists don't really know what the heck they're talking about. I have to wonder how much of what he said was taken out of context. And although I am hoping to give Dr. Levine's protocol a go, I certainly don't agree with the whole "Grinch Syndrome" name either. It's not cute at all. I was in the best shape of my life when I got sick, so although I certainly hope the exercise will "cure" me, the reality is it probably won't. Not to mention that most people I've encountered with dys were previously active individuals. So frustrating when we're all lumped together in the same group and the complexities of each person's disorder are ignored.

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  18. I found out about the NY Times article from my sister the doctor who believes the word of god speaks from the New England Journal of Medicine and the NY Times. I have been dealing with POTS since my daughter was diagnosed 4 years ago. After 12 hospitalizations, an occipital nerve stimulator implant for migraines, and four years of basic hell, my daughter is back in school. She is still on a ton of meds for her POTS and takes sleep meds that would put an entire family under due to her insomnia.

    I am 47 and have POTS, chronic migraines, and vaso vagal and have been struggling. Now that "God" has spoken at the NY Times, my sister now accepts
    the diagnosis but says "she wants her sister back" and gave me a lecture on
    exercise and Blood pooling. I held my tongue as best as I could.

    Instead, I emailed your blog to my sister. I hope your ranking is right up there with the NY Times...you are #1 on my list! I also emailed the NY times writer and suggested she interview Dr. Grubb next time. Dr. Grubb told my family POTS is hard to treat because the response of the autonomic system is a moving target. Every patient is different.

    Will you please submit your response to the author of the NY Times article? I would love see it published in letters to the editor!

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  19. Defy gravity - Thanks babe. That's why I gave him benefit of the doubt as journalists can be very selective in what they include. There are people who swear by the Levine protocol, so I do hope it works for you. Exercise seems to be a key a factor to management, hell I've been in physio since 2007, plus a home exercise program, so it's not like I discount its benefit. But 'cure' is a big call without decent longitudinal data, and relapse after or if you stop the program. And the whole "Grinch" issue rubs me the wrong way, both as a patient and former researcher. Awareness is beginning, but we have a long way to go.

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  20. Anon - I'm so sorry to hear that you and your daughter are having the same experience. It's hard enough to deal with on the practical level without the added burden from those who simply don't understand.

    I have sent my post to The New York Times, both to the editor and the journalist. No idea if they'll post it or not, you can only try. Fingers crossed they'll print it, or at least look further into the issue.

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  21. Such a great article. Thank you so much for writing it!

    I have POTS secondary to M.E. and so I would in no way claim to speak for everyone with POTS, or claim that what is true for people with M.E. is true for all POTS patients, as there are clear differences. But I would like to let readers know, for the record, that:

    a. Almost everyone with M.E. qualifies for a POTS diagnosis.

    b. Overexertion of any kind (orthostatic, physical, cognitive and also sensory) can only make patients with M.E. worse. Any activity beyond a patient's limits causes relapse. Repeated overexertion causes disease progression and can also end in death through cardiac failure.

    Like many people with M.E. I was told to just keep going and that if I wanted to do things again I just had to do them. Mind over matter in other words. I tried my best to follow this advice as I trusted my doctor. It was the stupidest thing I could have done and I wish so much I hadn't been as 'strong'as I was and able to push for so long and while so ill. I am still paying for that bad advice now, more than 10 years later. I am still bedbound and housebound and so so ill due to this bad advice. I'm only in my 30s and have lost so much of my life.

    Stories like mine are so common in the M.E. community, it is such a tragic waste.

    Also, like nearly all M.E. patients, I went from being normal one day to severely disabled with orthostatic and other problems the next. To imply this could be due to deconditioning is quite silly! Impossible as well!

    I say, listen to your body! If being more active is making you feel far more ill, that is your body telling you that it can't cope with it. Telling patients to 'positive think' their way through a physcial illness is less than helpful and can have devastating consequences. Patients need real help, testing, and to be listened to rather than told that their attitude is what their health hinges on, when this is just not true!

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  22. hahaha i am mentally ROLLING in the floor laughing my neuropathic ass off. he actually said to avoid naps.

    i don't know about anyone else, but MSA isn't the only bee in my proverbial bonnet. they believe that my lovely Bob was caused by sarcoidosis. And frankly, i take naps ALL DAY LONG.

    it has ONLY been the frequent taking of naps daily (which was accomplished by leaving the job i loved as a health practitioner) that i actually was ABLE to begin to rejoin my life some and spend a few precious hours a day with my son and husband.

    no naps. and it's all in my head. *eye roll*

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  23. J Bassett - I think the biggest failing of this article and similar ones is the one size fits all approach. Whilst the syndrome/collection of symptoms are often the same, the aetiologies are so different in each case and often unknown. There may be a group that solely require exercise, but they don't constitute ALL Dysautonomia patients. Similarly, there are people whose physical symptoms are a manifestation of underlying psychological aetiologies, or have their symptoms exacerbated by their coping skills (I used to work with these groups back in Neuropsych days) but again they are a subtype (small subtype), not representative of ALL patients. I don't understand how hard it is for some medical professionals to understand this concept. Treatment needs to be individualised and generally multimodal. Most have quite a complex picture. It just gets so frustrating at times.

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  24. Mel - and that's it in a nutshell. We are a diverse and complex group. Many (including myself) often have multiple medical issues. One size fits all simply doesn't work. Like you I gave up work I loved to be able to concentrate on my health and my family and have a little bit of life. Such simplistic statements are not helpful to many patients. I know I am pretty confident and can argue on my own behalf but there are many patients who aren't in that position and I worry that they may not get the treatment they need. Awareness has a long way to go, we just need to keep plugging on.

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  25. that's a whole 'nother rabbit hole, there. they aren't getting the care they need.

    it took YEARS... nearly 2 decades. and the last 4 of my CONSTANT complaining before they found 4 inch INCH lymph nodes in my chest. before that it was... you're fat, you're getting older, you're... on e excuse after another. and NO one looking for why. i almost died after a surgery i had to have because i kept falling down. no one could tell me why my limbs were turniong blue (reynauds is a hallmark in both sarc AND ans, but in me it was because i laid on my arm funny? really? and when i questioned WHY after 2 years of 50K units of vitamin d 3/week was my Vit D level still <10, I got met with blank stares. (Vit D dysregulation is a primary indication that you need to look for WHY rather than say to a person who lived on the BEACH "you don't get enough sunshine>" really? really?)

    I have a massive generalized distrust of physicians now, even with the majority of my docs being specialist at Cleveland Clinic or the U of M Med Center now.

    all of this to say that i do NOT feel that generally patients are getting adequate, much less expert care. doctor's live inside a box. and even me, with my degrees as a medical tech and KNOWING that my labs were OFF, and having the capability of doing research without scaring myself into a tizzy did nothing to convince them to go farther.

    and most patients won't come from a health care background. they'll come from the position of doctors are gods. and if their doc says they're tired because they're depressed, they will take the celexa or zoloft until they DIE, without ever getting the care they so desperately need and so vehemently desire.

    sorry for the mini rant on your two year old blog.

    <3 Melle

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  26. Melle - rant away. Unfortunately, for those of us who fall outside the norm or are complex the fall back is frequently a diagnosis of some form of psychological issue, low motivation etc. I agree that unless you have the knowledge or confidence many will fall through the cracks. Sadly, even when doctors write someone off as 'depressed' they often fail to seek out or offer the person appropriate care and throw meds at the 'problem'. If after a year your patient isn't improving surely you'd seek further treatment or testing for them. So many flaws in the system. And so many people falling through the cracks.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx