It’s Not All in Your Head: Depression, Anxiety, Mood Swings, and Multiple Sclerosis


You probably saw it on the internet as many times as I did: depression rates among patients with multiple sclerosis are considerably higher than in the general population or among patients with general medical conditions other than ms. Three main reasons are usually referred to explain this: a natural response to the diagnosis and to the many losses ms brings along the way; possible medication side effect (especially if you’re on interferons); and damage caused by ms lesions to the brain structures that regulate emotions and emotional responses.

However, this book takes it a step further, by pointing to research that suggests that depression may be an inflammatory disorder, much like ms. It is found to be an early sign of many inflammatory conditions. I remember my neurologist telling me the first symptoms of ms were fatigue and depression. I could understand the fatigue part but I couldn’t quite get how depression fit. This books explains why, emphasizing the role of cytokines in the process. So, instead of looking at depression as a consequence, maybe we should be looking at it as a different underlying mechanism.

Another thing I learned from this book was that pain and anxiety share some of the same biological mechanisms. Being that a lot of people with ms suffer from pain, improving patients anxiety levels could greatly relieve pain as well. Anxiety and depression can and should be dealt with through every option available, including medication, exercise and cognitive therapy.

The book then proceeds to suggest many different self-help techniques, illustrated by stories of people living with ms. Now, as a self-help book, Alison Shadday’s MS and Your Feelings will always be my favorite. I found It’s Not All in Your Head to be a bit repetitive at times and not delivering in some crucial moments. For instance, at a certain point, we’re invited to write down our roles in life, identify the stressors associated with each role, and then come up with solutions for each stressor. The author gives examples of roles (patient, parent, student, employee…), of stressors (MRIs, family holidays…) but no examples of solutions. I reckon however there are good tips in this book and therefore I recommend it.

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I started reading this book because a friend of mine recommended it to me, but at first I wasn’t sure I was enjoying it. After some years reading very technical books about similar subjects, I thought this book sounded like a collection of anectodes that only very lightly tapped on the tip of the iceberg. But Leonard Mlodinow had me when he explained why two Tylenols could actually ease the pain of social exclusion and even the pain of a broken heart.

Feeling curious? Leonard Mlodinow draws from the early beginnings of psychology and evolutionism and traces them until the recent birth of a new field called social cognitive neuroscience. That is to say, this new field studies how our conscious and unconscious mind process thought, and it does so through the use of brain imaging technology, which is very recent. They then apply their results to our social interactions, trying to figure out how conscious or unconscious the decisions we make in our everyday lives are.

The author compares the conscious and unconscious to two entire railway systems. “Each comprise a myriad of densely interconnected lines, and the two systems are also connected to each other at various points.” They both work together in a very smart way evolution-wise, in order to allow us to navigate fast and safe in a world full of dangers, challenges and information to sort out. Our conscious picks up the general picture and our unconscious fills in the gaps. It does so with the visual data, with our hearing and with our memory. “In each of these cases our subliminal minds take incomplete data, use context or other cues to complete the picture, make educated guesses, and produce a result that is sometimes accurate, sometimes not, but always convincing. Our minds also fill in the blanks when we judge people, and a person’s category membership is part of the data we use to do that.”

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Aggression turned inward

As someone who comes from a family with a history of mental illnesses and who has suffered from depression as well, I have read a lot of books, articles, and testimonies, not only in the first person but also from doctors and therapists. However, none had me nodding from beginning to end as this TED Talk by Andrew Solomon. The first ten minutes are particularly so accurate in giving us a panoramic view of all the different aspects of depression. I resonated with what he said about finding there were people who seemed on the surface to have what sounded like relatively mild depression who were nonetheless utterly disabled by it.” And he echoed as well many interrogations I’ve been struggling with: “if I have to take medication, is that medication making me more fully myself, or is it making me someone else? And how do I feel about it if it’s making me someone else?”

I didn’t know who Andrew Solomon was before watching this TED Talk by chance, but I did a little research and found out that the book he wrote on depression, called The Noonday Demon: An Atlas of Depression, won several awards, including the Books for a Better Life Award from the National Multiple Sclerosis Society. I haven’t read it yet but I already have it here with me. I hope it’s as poetic and insightful as this talk.

I’m self-destructive therefore autoimmune

545119_3656268165275_2141072253_nWhen I was diagnosed with multiple sclerosis, my neurologist explained to me in broad terms what happened in the brain of people with this condition. I realized it was an autoimmune disease, to which she said yes, it could be considered an autoimmune disease. I sobbed a little more (I sobbed the whole time) and asked her “So this is another way I found to hurt myself?” She told me not to think about it that way but looking back it makes perfect sense that I have an autoimmune disease (two, if you count with endometriosis). I never tolerated myself much, always brought myself down, and due to specific circumstances in my upbringing I never had much emotional independence, sense of self, or psychological boundaries. So no wonder my body was confused and shooting whatever seemed like a nice thing to shoot.

Autoimmunity fascinates me from every perspective. From a biological point of view, it’s not very smart, is it? It’s just pure self-destruction. From a psychological point of view, can our body really reflect a poor sense of self? Or is there more to it that we don’t even dream of? It remains a mystery, one that scientists are still trying to find answers to. And the list of autoimmune diseases keeps growing, as evidence suggests well-known diseases such as schizophrenia may have an autoimmune pathogenesis. Wikipedia lists many of these with links to scientific articles. It’s worth taking a look.

It is also worth taking a look at how other authors see autoimmunity. In Why Zebras Don’t Get Ulcers, Robert M. Sapolsky notes that both physical and psychological stressors seem to cause an early stage of immune activation. However, long-term/chronic stress begins to have the opposite effect, namely, suppressing immunity. But why can’t we not just let our system remain at the enhanced, improved level achieved with temporary stressors and “get the benefits of an activated immune system all the time? Metaphorically, why not have your military that defends you always on maximal alert? For one thing, it costs too much,” he explains. “And, even more important, a system that’s always on maximal, hair-trigger alert is more likely to get carried away at some point and shoot one of your own guys in a friendly fire accident. And that’s what can happen with immune systems that are chronically activated – they begin to mistake part of you for being something invasive, and you’ve got yourself an autoimmune disease.”

Doctor Gabor Maté also links autoimmunity with chronic stress, but he goes further along the way explaining that chronic stress most of the times originates from relationship patterns established during childhood. In When The Body Says No he writes that “The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult.” He notes that “Within the individual organism, physical mutiny results from an immunologic confusion that perfectly mirrors the unconscious psychological confusion of self and non-self” and adds that “Cancer and ALS and MS and rheumatoid arthritis and all these other conditions, it seems to me, happen to people who have a poor sense of themselves as independent persons. On the emotional level, that is – they can be highly accomplished in the arts or intellectually – but on an emotional level they have a poorly differentiated sense of self. They live in reaction to others without ever really sensing who they themselves are.”

This unfortunately makes perfect sense to me considering my personal history. I’m not sure how it applies to the millions of people diagnosed with these diseases but I think it adds a valuable ingredient to the genetic and environmental factors we know about. You see, I always wondered why my sister had mono when I was 8 and I didn’t catch it then, even though I would steal her lipsticks and drink from the same cups. I caught it when I was 18. And why when exposed to the same flu virus some people are bed-ridden and other just have mild symptoms? The virus is the same, right? So there’s got to be something in our immune systems, which in turn are highly influenced by our emotions, that determines whether we’re going to get sick or not.

There is a famous story about Louis Pasteur that illustrates this view. Claude Bernard, his contemporary, thought that germs would only cause harm to the body if it presented the right conditions for them to thrive. He emphasized that it was more important to keep the organism “clean” and in balance than to attack the germs. Pasteur didn’t agree. He thought germs and microbes were the only reason people got sick. However, later in his life he came to change his mind. He’s quoted as saying on his deathbed, “Bernard avait raison. Le germe n’est rien, c’est le terrain qui est tout.” (“Bernard was right. The microbe is nothing, the soil is everything.”)

Why Zebras Don’t Get Ulcers

downloadIt’s true, zebras don’t get ulcers. For one thing, they don’t worry about things that are probably not even going to happen. Ever. Humans are the only ones who have that ability, and very often when we worry our body turns on a stress response, flooding it with a number of stress hormones that will promote a series of changes in our organs and our natural balance – heart rate goes up, immune system is suppressed, blood is diverted to muscles or wherever is most needed… Basically we have evolved to turn on a fight-or-flight response like zebras and other animals, however, unlike zebras and other animals, we don’t turn it off as easily – and that’s because most of the time we don’t react to threats, but to perceived  threats.

This is one of the basis to chronic stress. And we know that chronic stress can damage our body in many ways. It doesn’t necessarily means chronic stress is the cause to several diseases. It means that chronic stress, by permanently altering the body’s homeostasis, creates an environment in which it becomes impossible for the body to fight other factors, such as genetic predispositions or environmental risks. This is true for autoimmune diseases but also for heart conditions, ulcers, depression and many more.

Why Zebras Don’t Get Ulcers is the bible of stress. It’s not a book about a specific disease, it it rather a book about how stress can pave the way to many diseases. Each chapter focuses on a different system: cardiovascular, respiratory, endocrine, digestive, immune, reproductive… It also includes chapters on sleep, pain, memory, depression and anxiety, and addictions. And it doesn’t leave you with that. It includes insights on stress management, coping styles and how personality and temperament come into play.

The book is rather long and at certain points can become a little technical, but it is also filled with humor, relevant research and even the author’s personal experiences. If you needed further proof that you need to work on all that stress that invades your life uninvited, then this is the book to turn to.

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MS: The Facts

31fibAITxuL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_When I was diagnosed with multiple sclerosis I felt the need to have a little guide that would sit on my shelf and I could pick up whenever I had doubts about anything or wanted to clarify a specific aspect of the disease. So I found this little book that has served this purpose since I purchased it.

It was released in late September 2012, which means that its information is still relatively up to date (though I expect – and hope – that with more therapies and scientific discoveries emerging it will become outdated it coming years). It’s only 84 pages long so it doesn’t deal with all the subjects with a lot of detail or depth but it gives a very significant overview, in a very accessible language, of everything you may want to look up.

Covered topics include possible causes for ms, the inflammatory process, symptoms, disease progression, diagnosis, social aspects of living with ms, how the immune system works, autoimmunity, treatments available and in development and alternative therapies. It basically covers all relevant topics for people interested in understanding what’s going on and how to manage it all.

One thing that struck me while reading the book was that the authors argue that the immune system of people with ms is normal, contrary to what is usually believed. They point out that brain tissue of people with ms reveals the presence of mild abnormalities and disturbances, and those abnormalities are the ones that call on the immune system cells to attack. This puts the drugs we take in perspective, since they seem to be targeted at the consequence, not the cause. But whatever the causes, I think this book is essential to have a little more understanding of what’s physiologically going on in our bodies.

Somatization, or Why My Body Never Shuts Up

Your-Body-Is-TalkingThe reasons for psychosomatic disorders can be varied, but they are usually linked to an ongoing stressful life situation which, for one reason or another, sufferers cannot (or feel they should not) air. This can be an untenable situation at work where they are required to do jobs which they have not been trained to do, an unpleasant work atmosphere, frequent arguments at work or at home, feeling burdened by great responsibilities without getting recognition, or aggravation over an ongoing situation such as a long-term project at work or problems with difficult children or difficult parents.

It is really surprising how resilient the body is to stress. Emotional upset often needs to go on for a long time before the body’s defences break down or, to put it more precisely, before we notice the body is suffering from the emotional onslaught. The body has an incredibly efficient way of recuperating, so when we find we cannot recover from an illness this indicates we must have run down our resources. This is a warning signal that must be taken seriously or we risk even graver physical problems.

Principles of Hypnotherapy, Vera Peiffer, Singing Dragon, 2013

MS and Your Feelings

If you’re looking for a self-help book about multiple sclerosis, Allison Shadday’s MS and Your Feelings was to me the most helpful out of all I’ve read. Allison Shadday worked as medical social worker, and she worked with a lot of ms patients when she was diagnosed with ms herself. Because she found it hard to find counseling after her diagnosis, she decided to specialize in counseling for people with chronic illnesses, in the hope that she could give these people more support.

MS and Your Feelings is very useful and complete. It provides a lot of information about the disease, but mostly a lot of information about dealing with the emotional turmoil that comes with it and finding positive solutions to physical, cognitive and emotional challenges.

I personally found very useful the section about us trying to shield from intense feelings or emotions because we fear those experiences may trigger an attack. However “climbing into a shell and hiding from life won’t insulate you from illness” either, so she suggests ways to manage it all. Her suggestions are realistic, down-to-earth, not patronizing at all, and varied, because what works for someone may not work for someone else. I still use some of the techniques to alleviate stress she mentions and I compiled some of her advice in a file that walks around with me on my smartphone and that I check as a reminder whenever I feel insecure, stressed out or I’m just being mean to myself.

Shadday writes both from a professional and a personal perspective, which gives the book a sense of being close to you and trustworthy. She tells stories about herself, often with a sense of humor, that highlight many aspects being analyzed. If you have thirty minutes, this interview with her also gives a glimpse of many things you will find in the book.

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When The Body Says No








Doctor Gabor Maté worked as medical coordinator of the Palliative Care Unit at Vancouver Hospital for seven years. It was during that time that he started investigating the connection between emotion, stress, coping styles and disease because he realized that most of his patients only allowed themselves to feel or express anger at those final stages in their lives.

In this book he explores the mechanisms of different kinds of diseases – from multiple sclerosis (first chapter), to amyotrophic lateral sclerosis, lung cancer, breast cancer, prostate cancer, among others – draws from research, and links these data with the stories and backgrounds of his patients – as well as well-known personalities who suffered from these diseases, such as Jacqueline Du Pré, Stephen Hawking, Béla Bartók or Ronald Reagan – making connections and highlighting behavior patterns.

Apart from being so scientifically informative and accessible, what struck me in this book was some of the heartbreaking stories. A patient tells about her happy childhood and how great her relationship with her parents was, and then, when she starts to describe it, there’s nothing but dysfunction. The truth is, when you’ve been under emotional stress for long during your childhood, you can lose your ability to perceive certain situations as stressful. But you body perceives them. And they damage your body. Another patient is so emotionally dependent that she needs to ask her mother for permission to die, even though she’s a grown-up woman…

41ns33Z8vhLI couldn’t read this book as fast as I wanted to because some parts moved me so much that I had to take breaks. I also started reflecting a lot on my own background, my inability to express anger, and all the emotions I keep locked inside. This has definitely been one of the most useful books I’ve read about the link between emotions, stress and disease and I recommend it to anyone who also wants to dive into this subject.

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Jacqueline Du Pré

Jacqueline Du Pré was one of the most fascinating cellists to appear in the classical music world. Raw, intense, emotional, her performances are still remembered, her recordings have never gone out of print, and her story moves thousands of fans due to her career being cut tragically short by multiple sclerosis.

Jacqueline was a somewhat idiosyncratic person. Her music career was fiercely supervised by her mother, who didn’t want to let go of her child genius, and Jacqueline somehow resented that. She recalls having a very isolated childhood due to music lessons and practice, although people remember her as a normal kid and her family as a happy one. She was shy but also very assertive – and even a little aggressive – sometimes. She was a simple girl who wanted to settle and have children but couldn’t say no to her career demands. She always smiled because her mother educated her daughters to be ladies who never expressed discomfort, distaste or anything that could possibly be wrong in their lives. The only outlet for her most intimate emotions was her cello – and you can hear that in her passionate performances.

I discovered Jacqueline because of her link to multiple sclerosis, but as soon as I started listening to her I couldn’t but be in awe. I particularly love the Elgar, Dvorak and Schumann cello concertos. In my opinion, she doesn’t give her interpretation of the concertos, she gives the composers’ interpretations. And compared to other interpretations, I very much prefer hers.

Now I have yet to read other books about Jacqueline because her life story has so many angles, but I found this biography very useful. It gives an overview of her personality and her life, from her early upbringing, to her rise to stardom and her declining years. Very enjoyable read.

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