It turns out that it’s been a big theme in my reading over the past few years – more so than I realized. I just finished reading The Gratitude Diaries, and I wanted to share what I found most compelling about the books I’ve read on this topic, as well as some of the common threads that run through them for me. Today is Worldwide Gratitude Day, so it seemed like a perfect time to finish off this post and share with all of you!
Of all the books on this topic, the one that has had the most staying power for me is Martin Seligman’s book Flourish: A Visionary New Understanding of Happiness and Well-being. In his book, Seligman explains that psychology has typically focused on helping people to alleviate things that make us unhappy … but never about actually becoming happier. His passion for the topic seems to have come in part from his extensive research on psychotherapy and drugs. He says that through an extensive literature review on SSRIs:
for each you get a 65% relief rate, accompanied by a placebo effect that ranges from 45 percent to 55 percent … so high is the placebo response that in half the studies on which the U.S. Food and Drug Administration (FDA) based its official approval of the antidepressant drugs, there was no difference between placebo and drug.
He felt the lack of focus on happiness was a significant gap in modern psychology that needed to be addressed, and he set out to do so over the course of his career. He is now widely considered the founder of today’s positive psychology movement. Seligman says that “well-being, not happiness, is the topic of positive psychology”. Well-being has five measurable elements (PERMA – positive emotion, engagement, positive relationships, meaning, and accomplishment or achievement). No one element defines well-being, but each contributes to it. This is in contrast to Seligman’s earlier writing in Authentic Happiness, in which “happiness is the centerpiece”.
Through his research and applied work he learned that positive psychology has lasting effects, and that unfortunately, while we wish well-being for our children, schools focus on teaching them how to succeed in the workplace. The studies and programs for children that he outlines in the book seek to address that gap. Along with the other dimensions of PERMA (as summarized above), Seligman talks about the notion of resilience, and explores why some people have it and others don’t. The Penn Resiliency Program (PRP) teaches these basics to children, and has been proven to “prevent depression, anxiety, and conduct problems in young people”, in addition to teaching them how to recognize and capitalize on their strengths. An amazing and humbling accomplishment, to establish a scientifically-grounded approach that both alleviates the bad and amplifies the good in people! Seligman has conducted a huge range of studies with people from many different life experiences – from the army to schoolchildren. The fact that he was able to establish this vision for the field as a whole, and then do applied research to make it realizable and practical in a variety of circumstances has enormous appeal to me.
Based on his research and its application with many different types of people in a variety of contexts, Seligman has some very practical recommendations about how to bring ideas about gratitude into everyday life. Keeping a gratitude journal (an exercise he calls The Three Blessings) is a process of writing down three things you’re grateful for every day – it the single most effective way to bring a positive outlook to your life. I learned this many years ago during my sessions with a life coach, and it was interesting for me to learn that what felt good and true at the time was also proven to be uplifting. And a gratitude letter – writing a heartfelt letter and then delivering it in person – was by far the most impactful way to lift the spirits – the spirits of the author!
Stumbling on Happiness
Some time ago I had the opportunity to read Daniel Gilbert’s book Stumbling on Happiness. I enjoyed his summary of all the research on happiness, but since I already knew (from Seligman) about the distinction between happiness and well-being, I was disappointed to find that it was not explicitly addressed in Gilbert’s book. In retrospect, I had two major takeaways from Gilbert: (1) Humans don’t know what makes them happy. (2) Science confirms this to be true.
If you ask people to predict what will make them happy, what they thought beforehand and what does end up making them happy are not the same. In my case, just knowing that has been beneficial. I know now that my biggest life decisions were made without fully understanding the consequences or implications. Those decisions turned out ok. But I was a bit naive in assuming that the situation was under control or that I really understood the implications of the choices I was making. It’s good to know as I make big decisions in the future, at least.
For the most part, Gilbert doesn’t talk about how to apply the ideas he shares and make them real – which he acknowledged towards the end of the book. The only substantive advice he offered was to find someone who has made a similar decision recently and ask them about their experience, e.g. before relocating for a job, speak to someone who has just done so. This can be a valuable way to understand the practical realities of the decision you have in front of you.
The other part of Gilbert that I continue to reflect on is the Happiness Curve:
This particular graphic is a collection of the data from several different studies. The finding is, consistently, that we think that kids are going to make us happy, but the lowest point of happiness in our lives as a couple is when we have young children. The happiest moments are when we get married, and after our kids move out of the house. And yet, our social system and our biology continue to reinforce that we should reproduce. And we do – even though the belief that it will make us happier is patently untrue!
We know now that having children brings a deeper sense of gratification and life satisfaction that runs much deeper than happiness. Even if I prefer the concept of well-being and flourishing, it’s good to be reminded why raising kids is hard. And that we should enjoy it because it won’t last forever!
The Gratitude Diaries
The main impetus for writing this blog post was my completion of The Gratitude Diaries: How a Year Looking on the Bright Side Can Transform Your Life, by Janice Kaplan. It was an impulse buy from Barnes & Noble when I was there a few weeks ago. Perhaps because of Kaplan’s background in writing for magazines, I found that her summaries of research and the resulting insights were very accessible. She draws on Seligman, Gilbert, and many others – and she does a nice job reflecting on how to bring these ideas into practice.
In short, through the book she does Seligman’s Three Blessings exercise, and reflects on how it changes her life. It was a good reminder for me how powerful that exercise is – because I haven’t done it myself in many years now. She describes how the process of looking for the positive helps her change her relationship with her husband, her children, her estranged sister, her body (including exercise), her personal finances and her work. It was amazing to see the concept applied to so many life situations. I found myself uplifted by the book as I followed her transformation – I think she was buoyed by her experience, and the reader is too.
I was interested in the book at one level because I had stopped actively keeping a gratitude journal, but also because – in spite of some difficult circumstances at work and with my health – I have been more grateful in the past few years than I have been in my whole life. Why is that the case? And what are we doing differently in our family and in our home life that makes that kind of attitude shift possible? It was gratifying (!) for me that we have naturally engaged in the activities that lead to a more positive attitude.
There is obvious value of practicing gratitude in every aspect of our lives, but there were a few that especially resonated with me.
- One of the huge responsibilities I feel as a parent is to raise strong, independent, well-adjusted kids. I worry that my kids – who are more privileged than I was as a child, and even more so than the generation before – will not appreciate what they have. How to do we help them achieve that (to the extent that it’s possible) through parenting? Kaplan describes the research in that space, and provides some guideposts for helping other parents bringing those ways of thinking to their kids. Among others, sharing with them the wider world, so that they have a better perspective on their own life. And then, this idea (for small children especially) that there is no distinction between gratitude and reciprocity. That reminds me of my earliest readings in classical anthropology – Mauss’ The Gift, which was ultimately about the importance of creating healthy tension and mutual obligation between people.
- I also really liked her writing about exercise and appreciating our bodies. She shares that exercising outdoors and being in nature causes us to reflect on our place in the world, and so that inherently helps to create a healthy perspective that we might not otherwise get at the gym. My partner and I – in spite of the brutal Chicago winters – do everything we can to exercise outdoors. It was interesting to read that there is research that reinforces that.
- It’s been so very hard to be grateful for the body I’m in as I struggle with an autoimmune disease. Remembering that I still have two legs, two arms, and more may help me focus on everything I do have, instead of the vibrant health that I have lost over the past few years.
- There is very moving passage where she talks about many people who have lost loved ones, and how that has transformed their thinking on what is important. As I have lost a number of dear family members during this past year and a half, that one really resonated with me, too.
All in all it was an easy read and an accessible introduction to a growing body of research in the field of applied positive psychology.
Earlier I described Seligman as the founder of today’s positive psychology movement. I described him in that way because there are others who preceded him. For me, one of the most notable authors on this topic is Mihaly Csikszentmihalyi, the author of Flow: The Psychology of Optimal Experience. His is one of the most compelling books I read during my first Masters’ degree in Whole Systems Design, and the themes have stayed with me since I read it more than twenty years ago. He describes optimal experience as
times when, instead of being buffeted by anonymous forces, we do feel in control of our actions, masters of our own fate. On the rate occasions that it happens, we feel a sense of exhilaration, a deep sense of enjoyment that is long cherished and that becomes a landmark in memory for what life should be like.
Csikszentmihalyi says that we achieve that experience through flow, when people are
so involved in an activity that nothing else seems to matter; the experience itself is so enjoyable that people will do it even at great cost, for the sheer sake of doing it.
He says that
When people try to achieve happiness on their own, without the support of a faith, they usually seek to maximize pleasures that are either biologically programmed in their genes or are … [considered] as attractive by the society in which they live … But the quality of life cannot be improved in this way. Only direct control of experience, the ability to derive moment-by-moment enjoyment from everything we do, can overcome the obstacles to fulfillment.
For me these ideas were particularly interesting and compelling because the idea of flow seemed natural and obvious in the context of being an artist or a musician. But what about for those of us working in a corporate setting every day? Csikszentmihalyi believed that we could achieve a state of flow at work, and in fact provides some examples from subsistence farmers to surgeons. At one point in my career I was told that I would need to ‘give up anthropology’ if I wanted to get ahead. In other words, I could advance my career, or I could do what I loved and what I was passionate about, but not both. I just didn’t believe that was the case, because I saw both my parents study and work on topics about which they were both curious and passionate.
It was in June 2011. I had defended my PhD seven years prior, and I was feeling restless about my lack of career growth and the fact that I was doing a lot of other things besides User Experience (which is how I brought my anthropological self to work). I had a chance to hear Daniel Pink speak about his book Drive: The Surprising Truth About What Motivates Us. The premise of the book is quite simple – we are motivated by three very specific things – autonomy, mastery, and purpose.
- He said that we need autonomy because human beings don’t engage by being managed and controlled. People thrive when they have control over time, the team (who), the tasks, and the technique (how). This flexibility gives people a sense of autonomy, and when they have that, they are more likely to be engaged – and more likely to do the creative, conceptual, breakthrough work.
- People achieve mastery by giving them additional control over time (such as the Results Oriented Work Environment – ROWE), over team (such as Facebook’s model for letting new hires pick which team they want to work for- company picks the talent, but the talent picks the team), technique, and over tasks.
- And purpose matters, Pink argues, because at a philosophical, existential level, we’re all wondering why we’re here. Human beings deep down want to do things for a reason – particularly in work. In his research for an earlier book, he travelled around the US talking to people who had left large organizations to work for themselves. In those discussions, people often used the same word in telling their story. They were willing to work, but they felt like they weren’t making a contribution. The highest performing companies today combine a profit and a purpose motive.
You can watch a short video about Pink’s work on YouTube.
About a year later I had a chance to hear Barry Schwartz, author of Practical Wisdom: The Right Way to do the Right Thing. I wrote a blog post about it which you can read here. In summary I said:
What makes people happy? What we now know with reasonable certainty is (1) meaningful engaged work and (2) close relationships with people. That means that if you can get organizations to change the mindset and cultivate wisdom, they will help business and customers … but they will also be happier. The reason for optimism is to imagine that it would be self-sustaining, and that all levels of the organization could operate with the same level of thoughtfulness and empathy …
So for me, these ideas about happiness (or preferably well being!), gratitude, and empathy are woven together, both in our personal lives, and in how we engage at work.
These findings are also consistent with research that has been done at Gallup. Incidentally, Tom Rath (author of Gallup’s book Strengthsfinders) was a member of the first graduate program that Seligman taught on positive psychology. The Strengthsfinder model provides a structured way for people to uncover what they are good at, so that they can bring those strengths to their work. Employees that leverage their strengths are more engaged, and therefore more likely to stay. I have used the program many times as a way for team members to get to know each other, and for me to get to know them so we can jointly identify opportunities in our project portfolio that are a good fit for them. I find – consistent with the research – that my teams do their best work under those conditions.
There was an interesting passage in Kaplan’s book about the relationship between gratitude, empathy, and emotional intelligence (EQ) … and what that means for raising kids. She says:
It turns out that empathy is fundamental to gratitude – and to what psychologists now describe as ’emotional intelligence’. Various studies in brain and behavior suggest that IQ accounts for only 20 percent of a child’s success in later life. A full 80 percent is determined by other factors that revolve around emotional style. When kids can step outside of themselves for a moment and imagine what it is to be someone else, they are better able to respond to other people’s emotions – and to recognize their own. They also start to appreciate both what they have and what others have done for them.
For me – perhaps because my work has such clear value and purpose to me – this way of thinking has profound implications. I still identify as an anthropologist, and so in the work context, being a good researcher requires being empathetic. Empathy requires the risk of opening ourselves up and being vulnerable so we can do our best work. In the rest of our lives, being empathic also then makes space for gratitude to flow in.
To celebrate Worldwide Gratitude Day, author Anne Lamott has a lovely piece on this topic that you might also enjoy.
I would just like to say, for the record, that whoever designed and engineered the ‘myEasyMatch’ code concept that’s in use at the NorthShore University HealthSystem should seriously ask their Product Marketing team to find a new name. There is nothing easy or matching about it!
The scenario is that I needed to pay a hospital bill electronically, and (rather than sending me a link to the bill in their payment system), the HealthSystem sent me a letter with a code that I needed to type into the online form depicted below, so that I could pay the bill in question. The screen layout itself is pretty clear:
But the damn code is nearly impossible to type correctly (see below):
It literally took me 3-4 tries to get it right so I could pay the bill. Why couldn’t they just send me a direct link to my bill? Honestly a paper bill in the mail would have been easier. And they still do that sometimes, so why EasyMatch in this case? We’re a relatively healthy family of four, so I’m guessing that we’re not an atypical household. Would it really be that hard to find my bill from a list of … one?!
In reality, what makes me so grumpy about this is that ‘Easy’Match makes it easier for the HealthSystem, not easier for the consumer. I haven’t thought of a new name that doesn’t involve expletives, but if you have suggestions I’d be happy to read them in the comments!
I work in a university town. Although I often eat at my desk, it’s fun to be able to walk around at lunchtime, windowshop, and people-watch if time permits. And every once in awhile I come back into town on the weekends when I have errands to run. A few weekends ago I was scheduled for a haircut, and since I was running late I decided to park on the street near the salon (instead of in our garage at the office). I keep a change purse with quarters in my car, but when I put money in the meter, it continued to flash red. I really didn’t want to get a parking ticket, so I had a stressed out moment. And then … I saw the sign!
Pay with my phone? What?! So I tried it. The iPhone app download was fast, the tool was easy and intuitive to use … and best of all, the timer on my phone made it really clear when the meter was going to run out:
Pretty cool! The whole thing made me feel hip but a bit old at the same time. I think I responded and ‘fed the meter’ faster than, say, my parents would have. But it was still a bit of a mind-bender for me. I’m at that age where I understand enough about the technology and the task to engage. But it would have never occurred to me that parking meter payments could be automated with smartphones. A cool idea, but one that makes me feel a bit old!
I had intended to write a post for Thyroid Awareness month (which was in January). I thought it would be important to share my experience, with the hope that others would get the help they needed way sooner that I did. But, if nothing else, this disease is teaching me to manage my own expectations about what I can do. So, it took me four months longer than planned to get this written. That, I’m learning, is my new reality.
On my birthday (In October) last year, I was diagnosed with Hashimoto’s Thyroiditis. If you know anything at all about the thyroid and it’s role in human biology, you’ll understand why I’ve been largely absent online. The thyroid controls the most basic functions in the body at a cellular level; when it’s not working properly, nothing in the body really works as it should. Body temperature, digestion, basic cell functions are all affected. I didn’t even know where the thyroid was located – much less what it did – until I was diagnosed.
In the past week or two, I’ve spent some time revisiting and cleaning up the contents of my website. In doing so, I realized it’s been a year since I posted anything. I’ve never had that kind of lull before! But it’s been a really tough year, and I realized the only way I could start writing again is to be transparent about where all my energy and attention has gone. If I’m going to write again on this blog, I need to be able to talk about this; it’s the locus of my personal attention at the moment.
What is Hashimoto’s Disease?
Hashimoto’s is an autoimmune disease – one of growing number known to scientists. It’s estimated that nearly 50 million Americans (that is one in five!) are dealing with autoimmune conditions, compared to cancer (9 million) and heart disease (22 million). Autoimmune conditions are by far the largest health issue the United States is facing today. And yet the National Institutes of Health (NIH) spend less than 3% of their budget on related research. And yet now it’s understood that many of these autoimmune diseases share an etiology (cause of the disease), so a focused research effort could make a huge difference in the lives of Americans today. Yet, there is very little funding for research that cuts across medical specialities, and that research doesn’t seem to address the emergent understanding from the patient population about the importance of diet. In fact, many pharmaceutical companies are racing to find treatments, while our education of doctors (and therefore the treatment of patients) lags far behind. Today’s doctors take less than one credit hour of education on nutrition. This is in spite of a growing body of research that connects processed foods to autoimmune disease. Dietary changes have been shown to halt, reverse, and even put autoimmune diseases into remission. You can read more of those stories by searching for Autoimmune Protocol (AIP) recipes online.
One of the reasons I felt particularly compelled to make my experience public is because an estimated 75% of those with autoimmune conditions are women, and 90% of those diagnosed with Hashimoto’s are women. And 45% of women who approach doctors describing symptoms like mine are handled dismissively, and told that what they’re experiencing is in their heads, or that their fatigue is the reality of being a working mom. As a result, as many as 60% of people suffering are undiagnosed. Furthermore, as endocrinologists turn their attention to the explosion of diabetes in America, there is only one endocrinologist for every 25,000 patients that need their help. We cannot expect such a small population of medical specialists to attend to thyroid conditions on such a massive scale, and most other doctors don’t have sufficient knowledge or training.
The challenge with conditions like Hashimoto’s is that you will never put the disease into remission without treating the underlying causes of autoimmunity. You can take a pill (lots of them, actually!) to bring thyroid hormone and vitamin levels in balance. But the body never fully heals with pills alone. In fact, people with one autoimmune condition are three times more likely to develop another one. Or several other ones. And one specialist doesn’t have broad enough knowledge across the affected systems of the body to help patients on that healing journey.
If you’re not that interested in my personal experience, you may not want to read on. But if you believe – as I do – that this is a national health crisis, please take the time to read about my experience, and how I’ve started my healing journey. Hopefully you can help someone in your social network avoid experiences like mine, which (as evidenced by the dialogue and doctor-bashing and more doctor-bashing on patient support communities) are all too common.
It took me 5 years and 15 doctors to get my diagnosis. No, I am not kidding! And what is awful is that many, many other women struggle not only to put a name to their experience, but to get the medical guidance they need.
After the birth of my second son in 2007, I developed severe post-partum depression. It crept up on me and on my little family, and it was insidious. I gained weight that I couldn’t lose, and I felt like I was walking around in a fog. In talking to doctors, my obstetrician told me to have more sex and that I’d be fine. My general practitioner heard me and recommended Prozac for what she diagnosed as PMDD (like PMS, but worse). I felt some improvements in working with an acupuncturist, but not enough to really pull me out of the deep pit I had fallen into. He did say (as other Chinese doctors did later) that I looked blueish-grey (the color of a corpse), and that I ‘had no chi’. In the tradition of Chinese medicine ‘chi’ means breath, or life force. I definitely felt like my life force was draining away, and I was starting to wonder if it was just the reality of middle age, or of being a working mom.
In retrospect, my experiences at work didn’t help. I was working across four different time zones, and coping with the demands of managing a large team. Two weeks into my maternity leave I was taking phone calls from team members who were panicked about a massive organizational restructuring. In the end, I absorbed all that stress at my own expense.
I thought a new job would help (and it seemed to at first), but as the excitement a new job and the cross-country relocation subsided, I realized I was still not back to normal. Another gynecologist, another couple of GPs, another acupuncturist … and on and on. Never once in those five years did any medical practitioner mention my thyroid.
In retrospect, there were such basic signs. I had always been naturally warm, but in the past few years my body temperature at the doctor’s office was always around 97 degrees. It was not normal and I should have said something, but I was too damn tired to connect the dots from visit to visit. That one kills me, though. I know people have different normal body temperatures. But it’s such a basic measure, between my complaints about fatigue and weight, why wouldn’t any doctor have taken a closer look at my thyroid levels?! My thick hair was rapidly turning white, thinning, and falling out. No matter how I ate or exercised, I was unable to lose weight. I had always been a morning person, but now (no matter what time I went to bed or what kind of evening routine I put into place), I just couldn’t get enough sleep.
On my own I started to read more and more about mid-life health issues in women. I went gluten-free (in May of 2013), and I did find that my regular migraines almost completely disappeared. That was a huge improvement for me, as I was experiencing crippling headaches so frequently that I was carrying a bottle of extra-strength Excedrin around in my purse. I remembered that I was diagnosed with polycystic ovary syndrome (PCOS) while trying to get pregnant years earlier, and I learned that a diabetic diet was recommended. I started eating a low carb diet (you can read more about that experience here), tracking my food in detail, and exercising. I didn’t lose a pound, and I just got more and more tired.
But by that point, my new normal was going to bed between 8-9 pm with my kids, struggling to get up at 6 am, and taking 2-3 hour naps on the weekend. I was in my early 40s, but I really felt like my life was over.
Last year, after sharing my food and exercise journal with my gynecologist, she finally referred me to an endocrinologist. I had made significant changes to my food and was walking 3-4 times a week, but still hadn’t lost any weight. I waited five months for my first appointment, but the labwork revealed a diagnosis of subclinical hypothyroidism, or Hashimoto’s. I also had a number of nutritional deficiencies that are common with Hashi’s, including low B vitamins, low Vitamin D, and low Magnesium and Magnanese.
At the time I was so hugely relieved to have a name for what I was experiencing! The symptoms I read about online matched my experience exactly. Here’s how Hashimoto’s is described was described on Wikipedia at the time:
There are many symptoms that are attributed to Hashimoto’s thyroiditis or Hashimoto’s disease. The most common symptoms include the following: fatigue, weight gain, pale or puffy face, feeling cold, joint and muscle pain, constipation, dry and thinning hair, heavy menstrual flow or irregular periods, depression, a slowed heart rate, and problems getting pregnant and maintaining pregnancy. … Given the relatively non-specific symptoms of initial hypothyroidism, Hashimoto’s thyroiditis is often misdiagnosed as depression, cyclothymia, PMS, chronic fatigue syndrome, fibromyalgia and, less frequently, as ED or an anxiety disorder.
In terms of the effects of levothyroxine – you may feel a difference in a couple of weeks – I don’t know if it is going to be the entire answer in you. It should not be difficult to get your levels in range but sometimes that is not the basis for the symptoms. If your levels normalize and you feel no change in symptoms then that would be the answer. I don’t necessarily have an answer for your longer term question about feeling back to normal – as I think there may be multiple reasons for your symptoms.
And so, after a week or so of feeling elated, I had another huge emotional crash. The thyroid medicine was helping me feel a bit better, but still nowhere close to normal. And I had to wait six to eight weeks between each dosage adjustment, which meant feeling better (if thyroid hormones was even the solution) would take months and months. When I asked my partner how to describe how I was feeling she said “tell them you’re a shadow of your former self”. And I was. Once again I was not getting what I needed from the doctors who I thought should be able to help me.
It is really important to know what to test for and to get your thyroid hormone levels in the functional range. If you or a loved one are contending with this, don’t let anyone tell you pills are enough! Research shows that 90% of people taking thyroid hormones will fail to feel normal. Even the acclaimed Mayo Clinic website is misleading. It says:
The good news is that accurate thyroid function tests are available to diagnose hypothyroidism, and treatment of hypothyroidism with synthetic thyroid hormone is usually simple, safe and effective once you and your doctor find the right dose for you.
It’s a lie! It’s a lie! By the time you’re ill enough to get diagnosed, you already have antibodies. So it is extremely unlikely that a ‘simple’ pill is going to be enough to get your life back on track. Shame on the Mayo Clinic and the many other medical establishments that do such a crappy job educating patients about what it actually takes to heal. Anyone who tells you it’s simple or easy is either uninformed or lying to you.
So once again I went back to my research, which opened up a whole new world of possibilities for me. I read a number of books including Isabella Wentz’s book Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause. In addition to supplementation for all my vitamin deficiencies, I learned about the role of diet in treating autoimmune diseases, the relevance of understanding my own genetic make-up, and searching for other things (like past illnesses or environmental toxins) which could prevent me from feeling well again.
A support system
I am really so fortunate to have a family – my partner, my parents, and my sister – who tolerated all my sniveling, who confirmed that I was not myself, who listened to me and my ramblings about the latest medical journal I had read on one thing or another. I’m also very blessed to have lived many years feeling like another person entirely, so I have that healthy self of my past as a point of comparison.
But the reality is that auto-immune diseases are a chronic illnesses, and a small support system can be drained to the point that they can’t provide the emotional support you need. It’s no surprise, then, that communities like Hashimoto’s 411 (on Facebook) have over 30,000 members. There are so many disease-specific questions and concerns, and having that network to draw on – for questions about everything from lab results to food sensitivities to marriage counseling – is a huge relief both for the patient and for their families!
A few months into my diagnosis I was also lucky to stumble on Angie Alt’s SAD to AIP in Six program. I’ll talk more about the Autoimmune Protocol (AIP) below. Through this group coaching program, Angie works with other specialists (such as trained nutritionists) in small online groups to help people make the transition to a new way of eating. I had the chance to meet others (almost all women) who were battling other autoimmune diseases, and fervently hoping that food changes would help.
Food as Enemy, Food as Healer
Changing what you eat is not easy, especially when you know it may be a long term undertaking. However, there is a growing body of research to suggest that significant dietary changes can put autoimmune diseases (Hashimoto’s, Crohn’s Disease, Rheumatoid Arthritis, Multiple Sclerosis, and others) into remission. Why is that?
The research suggests that most (if not all) autoimmune diseases begin in the gut. You may have heard the term ‘leaky gut’ in the press? In medical language, it’s called ‘intestinal permeability’, and what it means is that the intestines have developed holes which are allowing food to pass into the bloodstream. The food molecules then trigger an autoimmune response, and the body begins to mount an attack on those molecules. You can learn more about this in detail in Sarah Ballantyne’s book The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body. At first I was resistant to all things ‘paleo’. Everything I had read and heard made it sound like the next Atkins or South Beach fad, and I really wasn’t interested. But the more I read, the more I felt that I should give it a try. What did I have to lose? Sarah is a medical researcher who was diagnosed with multiple autoimmune diseases. She explains complex medical ideas in simple, compelling ways. I found her book invaluable as a way to guide my own decision making about how to make food changes that would help me heal.
In the case of Hashi’s patients specifically, gluten and soy molecules also happen to look a lot like the thyroid, which leads the body to mount an attack on itself. One of my friends described Hashi’s as ‘a little Japanese man chomping away on your thyroid’. It sounds funny, but in fact it is not far from the truth; as the body tries to defend from the food molecules in the bloodstream, it ends up attacking the thyroid gland, rendering it less and less effective until the signs of Hashimoto’s appear.
I was at a goodbye lunch for a coworker in November, and I was enjoying a roasted pepper soup and a salad with roasted beets and goat cheese. Partway through the meal I began to feel nauseous and dizzy. I warned my team that I might need medical attention. The moment passed, but I developed a massive migraine as the day progressed. I just knew I couldn’t continue to live feeling as though I was being ambushed by food all the time. For each time I had an experience like that, it took me two to three days or more to recover.
After reading extensively, I decided I wanted to take food sensitivity tests so that I could begin to focus on healing my gut and my body in general. I paid for my tests out of pocket because I asked several doctors, and no-one was willing to order them for me. The doctors who refused said that the tests are inaccurate, that there are often false negatives, and that I should just eat more leafy greens and I’d be fine. In fact, other people online (whose opinions I respect) agree. However, in my case, I was having catastrophic issues with food all the time. Migraines were common, heart palpitations, my blood pressure was all over the place, I had unexplainable fatigue, digestive issues, and more. Fortunately, there are a number of labs that offer direct-to-consumer options, including Cyrex, Altress, and ALCAT. I am lucky to have the means to pay for the tests out of pocket, so I did.
Just before Christmas, the test results revealed my sensitivities. I had developed reactions to foods I was eating all the time! Beets were on the list, as were berries and melon, grapes, agave, several kinds of fish, most Indian spices, and many more things. I immediately removed all the offending items. It was not easy, but literally within a few days, I felt like a lead blanket had been lifted off my shoulders. I felt so, so much better!
Again, most experts recommend an elimination diet rather than allergy testing, but I think in my case, I would have still not felt better, because many of the things to which I am sensitive are permitted in those diets. It might not be the right thing for others, but in retrospect it was the right thing for me.
In January I joined Angie Alt’s SAD to AIP in Six program (described above) to make the transition to AIP, and I have been eating that way (in spite of my hectic work travel) since the end of January. The AIP is a more strict version of ‘paleo’. For autoimmune diseases, the AIP recommends eliminating all grains (not just those with gluten), rice and corn, dairy, eggs, nuts and seeds, nightshades, coffee, and more. For me that has meant batch cooking AIP foods and packing all my breakfasts and lunches for the length of my trip. I have also begun staying in a hotel with a kitchenette (or at least a refrigerator) so that I can buy and prepare food that is safe for me to eat. Business travelers will appreciate that I have to check my suitcase so that I can carry on my cooler (so annoying). And I almost always receive additional scrutiny by airport security. But so far I’ve made it work. The only real bummer is that there is just no way I can travel to India to visit my team right now, as it would just be a minefield for me. I couldn’t possibly pack enough food, and (having been there several times before) I can’t imagine what I could eat that would be safe.
I have also started making bone broth (you can learn more about why on The Paleo Approach blog) and homemade water kefir (a probiotic). I’ve developed routines around both which I hope will contribute to my ongoing healing journey.
The intestinal lining is highly regenerative, so within about 21 days of removing offending ingredients, it is largely mended. Bone broth and probiotics (such as kefir and sauerkraut) help too. But it takes the body much, more longer (some have estimated as long as two years) to address all the consequences – from inflammation, to the auto-immune response itself. Some people report losing 20 or 30 pounds of inflammation weight in those first few weeks! I was not so lucky, but I definitely felt another lift with the elimination of nightshades from my diet. What are nightshades? I didn’t know either! Eggplants, tomatoes, peppers, and potatoes are all part of the nightshade family, and something about them causes increased inflammation in the body. So when you have an autoimmune disease, it’s usually recommended to avoid them, and then (after a prolonged break), reintroduce them one at a time to see if they cause problems.
And that’s where I am today. I’m using an easy-to-read and concise ebook from the Phoenix Helix blog to plan my reintroductions. It’s going to take me nearly a year to work through the recommended stages and my known allergens. If I have setbacks it may take me longer. But, I have a plan and (hard hard HARD as it is) it’s working for me.
Of all the possible factors affecting my health, food was the one most completely in my control. However, I won’t deny that making these changes is not for the faint of heart. It takes tremendous willpower, especially if you enjoy sharing food as a way to build friendships or community.
As I learned more about the failure of our medical system to address the tsunami of autoimmune diseases, I once again found myself looking at alternative health options. I felt that I needed a doctor – if such a doctor existed – that would help me deal with the whole picture, from hormones to food and more. I had been to a couple of naturopaths before my diagnosis, and I do believe strongly in that kind of alternative care. But I felt at this point that it wouldn’t be sufficient.
Through a variety of online channels, I was exposed to Functional Medicine. This is an emergent area of medicine that is not only holistic, but personalized. That is, looking at the whole person in context along with their genetic make-up to provide the best possible guidance. It’s a special training that’s undertaken by all kinds of doctors, and today there are only around 200 doctors that have been through it. I was lucky to find an MD (a former pediatric anesthesiologist) not far from my house who was just starting her own practice. Again, as an out of network provider, I was lucky to have the means to pay the $250 a hour for an initial two-hour appointment. Because the practice was new, I didn’t have to wait another five months for an appointment, and my chances of getting some reimbursement from insurance was improved due to her being an MD.
My main interest in a functional medicine practitioner (FMP) was to get help in reading the analysis of my genome mapping, and helping me figure out what to do about that. I ordered my genetic tests from 23andme. There has been some controversy in the press about the organization, because they are planning to do their own scientific research, and then resell the data to pharmaceutical companies. I opted out of as much of that research as possible, knowing that this was the only direct-to-consumer genetic testing option available to me.
Once I received the data file, I submitted it to a number of online analysis engines, including Sterling’s App on MTHFR Support, Nutrahacker, and Genetic Genie. Ordering all three reports was a little bit of overkill, but I was on a tear to learn as much as I could. I read everything I could about my mutations, and then brought all my results to my FMP for discussion.
Among other things, I learned that I shouldn’t drink green tea (I had figured out it was giving me migraines, but didn’t know why). I learned that I might have a sensitivity to l-glutamine, a critical insight since that is an amino acid that is often prescribed for helping to heal the gut. The results correlated my suspicion that I had an allergy to fluoride (also reinforced by recent research and more research). I also learned about several mutations that, together, were affecting my body’s ability to detoxify. I started some additional supplements (such as Vitamin C) to help address the problems in those methylation cycles. I am now waiting for test results to understand more about the levels of certain toxins in my body, such as mercury from having fillings removed, arsenic in rice, or BPA from water bottles.
I do hope that the toxicity tests will provide some further insights into why I’m not back to my old self yet. Weight loss continues to be a challenge for me, as it does for many with Hashimoto’s. However, the body stores toxins in fat cells. Detoxing too quickly can cause huge problems, including brain damage. So, I’m not in that big of a rush!
Well, it’s been cathartic to get this written down! I hope that others will learn and benefit from my experience. And, if you’ve read to the end, please do pass the link on to others. For me, the most important takeaway is that Hashimoto’s is an auto-immune disease, and a chronic illness. It takes a long time to get so sick, and a long time to heal. Having the right support system, making dietary changes, and addressing the underlying cause of illness are the only paths to remission.
Living with Hashimoto’s requires extraordinary patience and persistence by the patient and their family. It can be soul-crushing to feel like your life is coming to an end, and that doctors don’t believe you. I read a moving article about Chronic Fatigue Syndrome; there is apparently some new research that show brain differences in those suffering from CFS. The science itself wasn’t moving, but the reaction of the patients really resonated with me – many expressed relief at the fact that the research might legitimize how they felt. On a related note, Stacy Robbin’s guest post It’s a ‘Beautiful’ Thing on the Hypothyroid Mom blog talks about what these types of illnesses take away. Many times it’s the things you’ve taken for granted.
In my case, the scariest thing was (and continues to be) the brain fog. I didn’t realize how bad it was until it started to lift. In her autobiographical piece entitled What’s Wrong with Me?, The New Yorker author Meghan O’Rourke said:
A common symptom of autoimmune diseases is debilitating fatigue. Complaining of fatigue sounds like moral weakness; in New York City, tired is normal. But autoimmune fatigue is different from a sleep-deprived person’s exhaustion. The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.
It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. …
To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.
I honestly question how I took on a new job (and, this year, a new role in the same company) when I can barely remember what day of the week it is. So much of my sense of self worth is caught up in my intellect, in my ability to read and synthesize ideas, in my ability to generate new ones. I am still not where I was before I had kids, but I am definitely better than I was six months ago, three months ago, or even one month ago. I can only hope things continue to improve as I unpack and address all the reasons I became sick in the first place.
I am seeing more and more in the press about autoimmune diseases, and about Hashimoto’s specifically. For example, What’s Wrong with Me? in The New Yorker, and Self magazine’s Is there an autoimmune epidemic?. I hope that this blog post will contribute to that growing public awareness so that women can get the medical attention they need.
One of the scary things about being chronically ill is that it can really consume you completely. In my case, I have to have my thyroid and vitamin level checked regularly, my diet is restricted, and with every meal I take 20-30 supplements to make up for the deficiencies in how my body is working today. Sometimes I get unexpectedly knocked back by something I ate or drank, and it may take me a week to recover. On those days, it’s hard to stay positive and focused on remission.
The subtitle of O’Rourke’s article is “I had an autoimmune disease. Then the disease had me.” I am trying really, really hard not to let this disease define who I am and how I live my life. I hope I can keep the positive attitude in spite of the many ups and downs. I keep telling myself that I have Hashimoto’s, but it doesn’t have me. And hopefully it doesn’t have you or anyone you love, either!
Learn More – Books
I’ve mentioned Sarah Ballantyne’s book The Paleo Approach and Isabella Wentz’s book Root Cause elsewhere in this post, but a list of books would’t be complete without mentioning them again, for reasons I reiterate in the final section, below.
Stop the Thyroid Madness and Stop the Thyroid Madness II are considered by the patient population to be two of the most important books written in this space. Janie Bowthorpe’s website of the same name provides a way to send these books anonymously to doctors who have failed to treat their patients effectively, or based on the latest science. I can think of … 14 doctors who should receive a copy from me! Her website is also full of information and resources that are informed by the experiences of other patients, and not by outdated medical practices.
I have heard great things about Dr. Datis Kharrazian. He’s written two books about thyroid disease. I purchased Why Isn’t My Brain Working?: A Revolutionary Understanding of Brain Decline and Effective Strategies to Recover Your Brain’s Health. But it is extremely dense, and, ironically, with my brain fog I haven’t been able to plow through it.
As I mentioned in the section on food, reintroductions after AIP are full of enthusiasm, stress … and confusion. Eileen Laird of Phoenix Helix wrote a short ebook about reintroductions that has been invaluable for me in preparing for this next phase of my journey.
The Hypothyroid Mom website has a long page with lots of books I haven’t even read yet.
Learn More – Online Resources
The American Autoimmune Related Diseases Association (AARDA) just recently published the results of their survey, which found that “Fatigue described as ‘profound, ‘debilitating,’ and ‘preventing them from doing the simplest everyday tasks,’ is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. It affects their mental and emotional wellbeing and their ability to work.”
The Hashimoto’s Institute houses the video and transcripts from an online summit. This material was some of the first that I read after being diagnosed. I think the variety of material is invaluable, and still among the best material I’ve read so far. Topics range from dosing of thyroid medicines to the science behind the guidance to ‘eat the rainbow’.
I think Sarah Ballantyne’s The Paleo Mom site is the flagship of what’s going on at the intersection of autoimmunity and food at the moment. If you only have time to read one site, this is it. The blend of science, personal experience, and varied recipes is wonderful.
As I mentioned above, I found Isabella Wentz’s book Root Cause to be an invaluable way to learn more about and address all of the reasons I might have ended up with an autoimmune condition in the first place. As a pharmacist she acknowledges the importance of doing more than taking a pill. She talks about her own experience that makes the guidance accessible and real. Her newsletter also continues to provide new insights.
For me, Hypothyroid Mom is near the top of the list, too. The current readership is a testament to the site’s value – Dana Trentini has nearly 750K visitors a month. Her posts are easy to consume and informative, and she also has a variety of guest bloggers. She also posts funny cartoons on her Facebook wall, which provides some welcome comic relief from all the medical articles and people desperate for guidance on their health issues.
There are a whole bunch of really wonderful bloggers posting AIP recipes, or Paleo recipes with modifications for AIP. There are too many to name them all here. Just do a Google search on AIP recipes to get started.
If you’re on this journey yourself, I would encourage you to try the AIP diet. I really enjoyed Angie Alt’s SAD to AIP in Six group coaching, and would recommend it as a way to jump start the diet changes, and to build an online support community. She provides an ebook copy of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol at the end of the course. The members of my group chose to form a small, closed Facebook group to stay in touch, and it’s been great to have a more intimate group to talk with about the challenges and improvements we’re encountering.
One of the AIP cookbooks that I like a lot is Mickey Trescott’s The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness. I use her sausage recipes (chicken garlic and sage, as well as three-herb beef) for my breakfast most mornings. I also learned to make my own kefir using her book. She now has a new online offering called AIP Batch Cook, which provides video instruction and recipes to prepare food in bulk for the week. This approach was recommended by Angie Alt, and I’ve learned it’s really the only way to do AIP. Otherwise, you don’t have food on hand when you need it, you send up eating things you shouldn’t, and ultimately delaying your healing process.
I can’t say enough about the value of online communities through Facebook. I had largely stopped using it before my diagnosis, but I find myself back there all the time now. I would recommend Hashimoto’s 411, Girlfriends’ Guide to Hashimoto’s, AIP for you and me, and more. Make sure you read the guidelines for the ones you chose to join. For example, Hashimoto’s 411 is a gluten-free zone, and is adamant about removing people who may be marketing products. The AIP group is just as zealous in other ways, as they want to be sure that non-compliant recipes aren’t posted. But the importance of having a support system can’t be underestimated, so if finding others to talk to is of interest, give those (and others) a try!
Today I got a first glimpse at the announcement for the Handbook of Business Anthropology, edited by Rita M. Denny and Patricia L. Sunderland. It will be available in May, but they are accepting pre-orders now with a 50% discount. You can review the Table of Contents, and if you’re interested in buying your own copy, you can use this coupon until May 31st.
And now for some shameless promotion …
Thanks to the unfailing patience of our editors and the team at Left Coast Press, I have a chapter in this book. It’s my first publication since having kids, and I am thrilled to be a part of this volume! The intent of my chapter is to help researchers understand more about Agile software development practices and how to engage effectively when those methods are present. Quite a bit of the content from the chapter is available on this blog under the Agile tag, if you want a sneak peek!