Happy birthday, Joan Didion – and me

Joan Didion is one of the most beloved American writers, and she also happens to have MS. Recently I found out her birthday is on the day I was diagnosed three years ago. So I guess today it’s happy birthday to her – and to me. In a way, it’s like a different person was born on the day I heard the words “multiple sclerosis”. It’s a cliché, but it’s true: life was never again the same. Even though I continued to go to work everyday and tried as hard as I could to lead a normal life, changes were gradually happening inside me. I became more relaxed about some things, and yet even more worried and anxious about others. I began to listen to myself more, especially my needs, and not caring so much about what other people think. I try to take better care of myself. Weird as it may sound, my self-esteem actually got better in many ways. I’ve been gathering my strengths and working on strategies in order not to let anyone treat me disrespectfully anymore. It’s like I’m proud of everything I’ve accomplished even with limitations most people don’t dream of, so there’s no way they’re going to bring me down. I go after the things I need more easily instead of being shy and insecure about them and doubting myself. I’m working on not depleting all my energies when I go after something. And of course this all sounds very inspiring and pretty, but let’s not kid ourselves – it didn’t happen overnight and it isn’t like this every day. It’s a work in progress, a process. There are setbacks. Things I need to work on more. Things that I don’t get right on a first try. Or a second. But as much as I hate having MS and as much as it scares me, it was a much needed wake up call and a chance to make some changes along my self-development path.

Joan Didion on being diagnosed: “I had … a sharp apprehension of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” It’s so true and it brilliantly sums up what I felt three years ago. But let’s not forget that we all with no exception possess self-defense tools and techniques to face up to that stranger with the knife. We need to find them, develop them and use them. We will be fine.

Pain

~ Pain is useful to the extent that it motivates us to modify our behaviors in order to reduce whatever insult is causing the pain, because invariably that insult is damaging our tissues. Pain is useless and debilitating, however, when it is telling us that there is something dreadfully wrong that we can do nothing about. ~
Robert M. Sapolsky, Why Zebras Don’t Get Ulcers

 

Depression is a disease of loneliness

I already shared this article on Twitter but I thought I’d share it here too.

It’s by Andrew Solomon, whose TED Talk swept me away some months ago, and I must confess I feel a little guilty because I haven’t yet started reading his book on depression, The Noonday Demon. I was delighted to find his new article on The Guardian though. As with his TED Talk, the words are vivid, fluid and meaningful, and he addresses many of my feelings, concerns and thoughts about depression.

Here are few:

“In an era in which Facebook has made “friend” into a verb, we often confuse the ambient intimacy of websites with the authentic intimacy that comes with sharing your life’s challenges with someone who cares – who will be sad because you are sad, happy because you feel joy, worried if you are unwell, reassuring if you are hopeless.”

“[…] but not treating the depressed is ultimately more expensive than treating them. People who cannot function end up on the dole; parents may not be able to take care of their children; men and women too depressed to sustain their physical health could develop serious conditions that cost the NHS a great deal.”

“Depression is a disease of loneliness. Many untreated depressives lack friends because it saps the vitality that friendship requires and immures its victims in an impenetrable sheath, making it hard for them to speak or hear words of comfort. […] Love – both expressed and received – is helpful, not because it ameliorates the symptoms of depression (it does not), but because it gives people evidence that life may be worth living if they can only get better. It gives them a place to admit to their illness, and admitting it is the first step toward resolving it.”

“Many people, however, are desperate for love, but don’t know how to go about finding it, disabled by depression’s tidal pull toward seclusion. Loneliness will not be fixed by medication, though pills may instigate the stability to open up to friendship’s liabilities: potential rejection, exhausting demands, the need for self-sacrifice.”

Full article here:
http://www.theguardian.com/commentisfree/2014/aug/16/depression-disease-loneliness-friends?CMP=twt_gu

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.”

Triggers, genes vs environment, and haunting thoughts on childhood

Last night a conversation started on Twitter about the triggers of multiple sclerosis and the question if an unhappy and stressful childhood could have messed up the immune system. I mentioned I lived my childhood with chronic stress and that has been proved to influence the immune system. When I woke up today a lot of people had stepped in with different opinions. Some of them acknowledged they had difficult family backgrounds, someone noted that while having had an unhappy childhood their brothers and sisters were fine, someone blamed it on a bacterial infection and some people mentioned genes were the only factor involved.

I believe that somehow all these are connected. Genes play a part. They carry the information that determines which conditions you’re more likely to develop. They’re probably the reason some people develop multiple sclerosis, while others develop rheumatoid arthritis, ALS, etc. However, they can’t be the only reason. And now I’m going to quote Robert M. Sapolsky on this article because he explains it a lot better than I do. Robert M. Sapolsky wrote one of my favorite books on stress, Why Zebras Don’t Get Ulcers, and here he discusses the role of genes:

Each of our 20,000 or so genes specifies the construction of a specific protein; proteins shape the structure and function of cells, the communication between them, and their collectivity as organisms. Scientists once thought that, starting at the beginning of a chromosome, there’d be a stretch of DNA coding for gene A, which directed the construction of protein A. Immediately after that would be the DNA coding for gene B, specifying for protein B, followed by gene C, and so on.

But this turned out to be wrong. Between the stretches of DNA coding for two genes came a stretch of ‘non-coding’ DNA, once pejoratively called ‘junk DNA’, of no obvious use. Then came the astonishing discovery that approximately 95 per cent of DNA is non-coding. It can’t be that nearly all of DNA is junk; instead, much of that 95 per cent is the instruction manual for using genes. More specifically, these ‘regulatory elements’ are the on-off switches determining when and how much a particular gene is transcribed (ie, prodded into instigating the construction of its protein). Just before the start of the DNA coding for a gene is a stretch of regulatory DNA constituting that gene’s ‘promoter’. If a particular ‘transcription factor’ comes floating over from somewhere in the cell and binds to that promoter, this triggers transcription of that gene.

So what could trigger these “transcription factors”? The answer is the environment. And environment can mean a lot of different things. That’s when lifestyle, infections, stress, emotions, etc., come in. In other words, you can have the genes that predispose you to develop multiple sclerosis, but without the right triggers you have a chance of never developing it. If it wasn’t the case, twins would suffer from the same conditions, and we know that’s not always true.

Drifting a little away from the genes topic, but still reflecting on the Twitter conversation, I started wondering about some things. While I don’t consider I had an unhappy childhood, I do know I come from a dysfunctional background. My parents divorced when I was 2 and my father didn’t care much and was always very absent. My mother was always too busy dealing with way too much she could handle on her own and didn’t pay much attention either. Except when I was sick. I remember when I was in hospital at 5 my father came to visit every day and brought me presents. My mother had to stop everything and take care of me whenever I had asthma attacks. So I wonder if I unconsciously learned in my childhood that being ill was the only way for people to pay attention to me and care for me…

 

Not Waving but Drowning

I once printed and handed out this poem to my therapist, because I was so desperate from being incessantly misunderstood and misdiagnosed. It’s one of my favorites still.

Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.

Poor chap, he always loved larking
And now he’s dead
It must have been too cold for him his heart gave way,
They said.

Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning. 

Stevie Smith

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.”)

Seeing MS

Dizziness
Dizziness

One of the most frustrating things about living with multiple sclerosis is that most symptoms are invisible and we appear to be well to other people. One day the entire world seems blurred – yet you’ll never know how I am seeing you. The other day I am so tired I can barely stand or listen to people talk – yet you’ll just say I’m not getting enough sleep. And how about those days when my memory took some time off and I can’t remember anything you told me? – you’ll just say I wasn’t paying enough attention, or worse, that I’m a bit dumb. And let’s not talk about those days when my balance is off and I bump into every other object in the room – then I’m just a clumsy little girl.

pain
Pain

I feel ashamed of talking about my little handicaps because people will most likely eye me suspiciously and assume that I’m just trying to get away with responsibilities or work. I had a boyfriend who once suggested I was faking symptoms just to get attention and on another occasion he suggested I was using the disease as an excuse to get what I wanted. This kind of response makes ms patients feel isolated, insecure, misunderstood – and that’s hardly breaking news. If you research a little about multiple sclerosis, either online or the old-fashioned ways, you’ll find lots of people wrote about it.

Hot and Cold
Hot and Cold

For instance, Sandra Amor and Hans Van Noort wrote in their Multiple Sclerosis – The Facts that “symptoms may range from being almost unnoticeable to severe, and anything in between. In fact, quite a few people with MS do not show any clear signs of their condition at all to untrained eyes. Paradoxically, this in itself can be a cause of problems too. Family members and colleagues may sometimes think that complaints may be exaggerated, or even imaginary. Society can sometimes be quite impatient with people who need special attention but still appear to be largely okay from the outside, especially when they are young.” Allison Shadday adds in her MS and Your Feelings, “Unfortunately, society reinforces a stoic stance. We’re taught that it is better to keep our ‘complaints’ to ourselves. But the price we pay is isolation. Keeping up a good front inevitably makes us feel distant and misunderstood by others, rather than accepted and loved, as we so desire.”

Numbness
Numbness

But the truth is, most people don’t care enough to read or research. So when I found out about the Seeing MS project, I thought it was fantastic. The idea is to expose the invisible symptoms, by depicting them in an image. Nine photographers were invited to participate, and anyone else can submit their pictures as well. Where words fail, maybe images can help.

My submissions to the project: http://escharae.wordpress.com/submissions-to-seeing-ms/

 

 

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