The power of negative thinking

I stole the title of this post from one of the chapters in the book When the Body Says No, by Dr Gabor Mate, because it said a lot of interesting things about positive and negative attitudes towards chronic illness, which is what I want to rant about.

After a while of being diagnosed with multiple sclerosis, when trying to keep my head above the water became less strenuous, I started trying to connect with other people like me. I found a lot of communities. Some of them were filled with people struggling with a lot of challenges and difficulties, and as much as I wanted to help and give my support, it became really depressing to visit those communities every day and read all those complaints and think that those things can happen to me someday,

And then I found other communities that were the exact opposite. At first, I wanted to jump on the positive wagon. I mean, who doesn’t want to be surrounded by positivity, right? But then again… I changed my mind. Some of the people who are members of these communities are bloggers and guest bloggers that go around the internet giving you tips and recipes to manage your day, your symptoms and your well-being. But some of them, if you follow them on Twitter, spend their days complaining about how their legs gave in, they couldn’t leave the house, they were in such pain, etc. And it gets depressing. More depressing than the depressing communities. Because these people sound like – and here comes an ugly word – hypocrites. There, I said it.

Another thing that’s bothering me is their advice. This week I clicked on a link to a blog post with tips to managing brain fog. I suffer a lot from brain fog so I was interested. And then I was disappointed. The tips included “Take naps along the day” which I would love to but I’m working 9 to 5 and I can’t really nap in the office, “Drink lots of water” which is lovely but I’m already drinking 2 liters a day, should I really drink more and become a swimming pool?, and “Cut on caffeine”, another great tip since I only drink one coffee a day. There’s probably a chance these tips are going to help someone, but to me they just felt unrealistic, childish and indulgent.

But that’s not the biggest problem I have with all this positivity. Today I watched an interview on a news channel with a fellow MSer about my age that really pissed me off. Among other things, she said that if you believed in your dreams you could make them come true. I may be a little skeptical and sound a little mean here, but I’ve lived enough to know that’s not true when you have such a debilitating condition like multiple sclerosis. I don’t believe in unicorns. I believe that if you’re strong-willed, if you have supportive people around you, a great team of healthcare providers and – let’s not kid ourselves – some money, you can make things happen, yes.

Statements like “Just believe you can” are not only misleading but they can be offensive too. I’ve read stories that made me feel like I’m not a worthy MSer just because I can’t run the marathon or climb the Everest. I could barely run 4 miles after 4 months of training, before I gave up because of the winter. Oh yes, I forgot to mention that I’m the only MSer who isn’t bothered by the heat, it’s the cold that gets to me, so I guess that’s another reason I’m probably not a worthy member of the family. I could write a great post with tips for all of you to survive the summer (try being born in a Mediterranean country, you’ll grow up used to really hot and really long summers) but I don’t pretend to know what works best for you and preach about it. Everyone is different. And no, it’s not great to have a chronic illness and have to deal with things most people don’t even dream of, so don’t make it sound like it is. Yes, there are good days too, and humor in many situations, but you can feel it when it’s authentic and when it’s not.

“Compulsive optimism is one of the ways we bind our anxiety to avoid confronting it. […] The onset of symptoms or the diagnosis of a disease should prompt a two-pronged inquiry: what is this illness saying about the past and present, and what will help in the future? Many approaches focus only on the second half of that healing dyad without considering fully what led to the manifestation of illness in the first place. Such ‘positive’ methods fill the bookshelves and the airwaves.
In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as ‘realism.’ Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden.”

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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.”)

Fatigue

 

 

 

 

 

 

 

Fatigue is the most common symptom in multiple sclerosis, with around 80% of patients reporting it. Out of all these patients, a large percentage of them also report fatigue as being the most disabling symptom. I definitely include myself among them. While I have other symptoms as well, they are not so prevailing or intense as fatigue. My fatigue is chronic. Even when I have a good night sleep, I may wake up feeling tired already. Sometimes I prefer not to shower on a particular day if that means I can spend a few more minutes sleeping. Totally gross, I know, but it’s that bad. Fatigue has also had a huge impact on my social life and on my relationships.

As I’m not one to keep my arms crossed, I searched for books about fatigue in multiple sclerosis. I found a lot of practical and useful advice, mostly regarding work, exercise, the way you keep your house, not asking for help or not knowing your limits, etc. However, I also started thinking about emotions and states of mind, and I found out that many of those can cause fatigue.

So what kind of emotions and states of minds can run you down?

  • indecision
  • uncertainty
  • anxiety
  • conflict
  • routine
  • sadness

Doctor Gabor Mate also gives a little insight about this subject in his book When The Body Says No. I’ll leave you with an except of a dialogue he had with the mother of one of his patients that absolutely had me stop in my tracks:

“She would always tell me when she was tired of me and she needed to rest because she found me tiring.”
“This is in the last months?”
“Yes.”
“Why do you think that is? You can’t be tiring. There’s no such thing as a tiring person.”
“My personality would tire her after a while – it was too intense.”
“When does one get tired?”
“When you’ve been working. So you think it was work for her to be with me.”
“She had to work too hard around you.”

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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