I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases. I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.
Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception. Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad. Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism. I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened. It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.
One of those changes was removing gluten from my diet. I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten. Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible. It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy. Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food. In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.
This was clearly an mistake. The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi. I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu. I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that). The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).
What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well. Must have been something I drank I mulled. I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce. When I asked about this the waitress informed me that the mango sauce had gluten in it! As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough! How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?! This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.
Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”. It is not something I choose not to eat. Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not. I would love to eat bread or pasta or random sauces like a “normal” person. But I can’t. And a restaurant should take my, and other’s, food allergies very seriously. I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking. Great.
Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough. Firstly there is the fatigue. Autoimmune fatigue is hard to explain unless you have actually experienced it. It is more than tired. I ache. I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one. I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days. Trust me I haven’t! Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion. In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated. But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive. Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.
That unfortunately is not the end of it. The other major symptom is brain fog. Just as autoimmune fatigue is hard to understand and describe so too is brain fog. Again I will liken it to a hangover – when you just cannot think straight – but far worse. I have next to no memory right now and have to write everything down on post-its. I struggle to clearly remember the bulk of some of my meetings – only the gist. I am struggling with people’s names (although I have never been good with names).
Brain fog however is more than just memory – it is also means I cannot think as clearly. For a split second today for example I could not remember how to look at the next week on my calendar. Basic and yet for a split second I drew a blank. I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self. She said that she would never have guessed the difficulty I was having intellectually. I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience? How would they cope?
This then brings me to my final point. Many of us autoimmune patients look fine, normal, healthy. You may never guess the battle we are going through or just how incredibly ill we feel. We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to. Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel. I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.
We do not want your pity though – but we do want you to try to understand. And we also want you to respect our health and our allergies and not be cavalier about it. If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open. I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later. Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.
I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored. Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms. Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out. Let’s hope!
PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi. And it was 100% gluten free.
Today I went for my regular swim with my Poolmate watch and found myself very frustrated when yet again I found that it was not counting my laps correctly. I presume I am probably like quite a few wearable owners in that I do not really use all the functions of my wearable device but I do expect it to get the basics right. In this case the basic function is counting my laps. Learning how efficient my strokes are is great but not much help if the device is not counting the laps correctly. I have written previously about my frustration with wearables when they don’t work and again I find myself in the same position. Not that long ago life existed without wearables and we seemed to do fine. Given my personal “fail” rate with my devices I wonder if they really are worth all the hype … or where things better before they came along?
The answer IMHO is yes and no. I think wearable technology is getting over-hyped but at the same time I think the opportunities that these devices offer are worth some hype nonetheless. Whilst my fails where frustrating they did not have a huge negative impact on my life (bar having to go back to counting laps in my head). In fact for many people a wearable is just a helpful addition to their fitness routine, which may indeed have a positive outcome on their health, for example the average fitbit user actually takes 43% more steps per day. If the device fails the worst case scenario is that for a while we may do less exercise – or just go back to how we always did it in the past.
However in other situations wearables could have a significant impact on people’s lives and in these cases the last thing you want is a device that does not work (especially if the fail is not spotted quickly). There are devices for example which patients could be using as a real support, for example in diseases like Alzheimer’s, or which have a large impact on their healthcare. Budgets could also be impacted, for example a recent study found that hospital costs dropped 6% for those who were inactive and became active. Failing devices which patients have become dependent on could lead to higher re-admissions and subsequent costs, or worse.
Linking the potentially very important impact from these wearable devices for some patients to a questionable device reliability does quite rightly result in a red warning flag. Currently many of the devices are being built for consumer fitness and a fail rate just results in disgruntled, perhaps slightly less fit, consumers. Moving these devices then into a more critical health environment without taking into account the greater impact could be a serious concern. Are these wearable technology companies doing enough to test their devices for duration and reliability in a more critical environment? Or are they just adapting consumer devices to seize a growing opportunity in the healthcare market? Are regulations adequate for these wearables – or indeed are regulations hindering innovation?
These are just some of the questions that accompany the hype of wearable devices. Despite my frustration today with my device I am still a big advocate for wearable technology simply because I do believe with time we will see some very positive impact coming from them for patients. In the meantime though perhaps we had best be careful of the over-hype and set our expectations around wearables more realistically. I for one am looking forward to getting my new Swimmo watch but I am also taking into account that it may not be all it is cracked up to be – or all that I hope – but if it can count my laps correctly for the next few years I will be happy.
And if I get to talk about all of this at #SXSW next year I will be doubly happy! If you have not done so already please vote for me: http://panelpicker.sxsw.com/vote/48954
Last week I wrote an article inspired by Mighty Casey’s blog post and in response to the very insulting post written by Niam Yaraghi in USA Today. The essence of the article can be summed up by quoting directly from the article:
“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”
As a patient I felt compelled to respond to this incredibly arrogant and derogatory post which paints patients as intellectually challenged when it comes to their health. I have personally experienced the effects of poor judgement from my doctors and the positive response of being an empowered patient – and I am certainly not intellectually challenged when it comes to my health!
I was expecting a few responses from patients to my post but I am positively surprised by the size of the response I have got from other patients. This article has clearly hit a nerve, not just with me, but with patients around the world, and quite rightly so.
For years patients have had to put up with a patriarchal attitude from doctors towards patients. Traditionally a doctors’ word was seen as gospel and patients were deemed uneducated enough to do anything but follow this medical gospel. This attitude still persists, sadly, with some doctors, and clearly also with some academics, despite substantial changes to society and access to health information.
For years we patients had to put up with being misdiagnosed, and having to suffer in silence. Women in particular have born the brunt of negative responses from physicians. A hard working woman (mother, lawyer, etc.) turning up with depression, fatigue and weight gain, for example, has generally automatically been diagnosed with depression and put on anti-depressants. No further questions asked, no further tests done, problem solved. Simple. Except many of these women were not suffering from depression and had to subsequently put up with years of ill health – and any queries on this diagnosis put down to “hormones” or “emotions” or indeed “it’s all in your head” (this was the response one endocrinologist gave me). We slaved on – sick, tired, depressed (despite the meds) and made do with being told what to do. Whilst women often bore the brunt of this many men also went through the same thing.
There has however been a big change in our society and healthcare, both from the patient side but also from more enlightened doctors (and academics). The doctor’s word is no longer always seen as gospel – for better or worse. Patients are now querying this gospel, and if they are not satisfied they seek other opinions and find their own answers. Patients are standing up for their own healthcare and becoming empowered enough not to accept this medical gospel. The internet and social media is allowing us patients to do our own research and to become more educated in our own healthcare. While we may not have gone to medical school, and I would never suggest patients are more medically educated than doctors, we are becoming educated enough to be able to enter into a discourse with our doctors and to challenge the old fashioned gospel. We know our own bodies and we know when something is not right.
There is now plenty of evidence of patient’s seeing potentially huge health improvements through their own empowerment and through taking a stand when they feel a doctor’s response may be overlooking a key factor. Doctors, whilst highly educated and trained, are still only human and they are not infallible. Today’s medicine is quite rightly moving towards a dialogue rather than the traditional gospel-like monologue.
After so many years of putting up with false diagnosis, of our queries and opinions being dismissed and of having to make do with sub-optimal health, patients are are naturally becoming more vocal in the healthcare arena. So when an academic comes along and tries to put us back into that old patriarchal system and tries to tell us that we are incapable of evaluating our own healthcare, we are quite naturally angry and upset. Years of not having had a voice has now made us louder and more vocal. We will no longer make do with the medical gospel and we will no longer just accept a doctor’s word, unquestioning, if we continue to experience the same ill health. We will dig deeper, we will look for more information and we will question the medical gospel in order to regain our health. And we will respond when someone questions our ability to understand our own health.
I am proud to be an empowered patient and I am proud to see so many other empowered patients also speak up against this derogatory portrayal of patients as being incapable of making decisions about their own health. I am proud to be part of this revolution in healthcare and to be a witness to the dawn of a new era in our own healthcare.
Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today. According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals. In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.
My first jaw dropping moment was when I read:
“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”
“……….” That’s me being speechless. Really? So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not? Looking at this one point I go back to my own experience. I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head. This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror! But doctors are always right according to Mr Yaraghi!) and something was wrong. I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK. It turned out that stupid patient me was actually right and the specialist I had first seen was wrong. I had Hashimoto’s and I needed to do more than just take my pills to get back to normal. Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.
This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is. Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease. This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease. This is all thanks to this amazing tool called the internet and social media. I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news. This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.
Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare. He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either. What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness. In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg). This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight). I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.
“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”
Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted. Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element. If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes. After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life. If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her. I think it is fairly clear from this just how important the patient physician interaction is.
When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews. Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages. It is also not just about the medicine any more. It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking. You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.
So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare. The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end. In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system. I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.