How did this happen? People so far away from what brought them together, people so heavily undermined by work, distance, relationships, that they can’t find the time to tell each other how much they miss each other, how much they enjoy each other’s company.

What happened? When did I get so sick that I can’t bear the thought of stepping out of my apartment to meet someone? When did this become so permanent and self-aware that I’d rather avoid people than keep telling them how life has become for me? When did I become so disconnected it doesn’t even hurt anymore?

Stigma is a product of judgment

From the website:

How To Touch A Hot Stove is a short documentary, narrated by actor John Turturro (Transformers, The Big Lebowski), which seeks to alter the way that people think about mental health. The film is a short documentary that considers the complex variations in human experience and differences in thinking, feeling, and perception. It identifies the new civil rights movement that has emerged to combat the marginalization of those with “mental disorders,” explores why that movement is more complex than other civil rights movements, and reveals the often disparate perspectives held both by professionals and those with lived experience — as it challenges audiences to go “beyond the movement” and make a difference.

Featuring Appearances by: Temple Grandin, Patch Adams, Dr. Oliver Sacks, Nobel Prize Laureate Dr. Eric Kandel, former First Lady Rosalynn Carter, Susanna Kaysen (Girl, Interrupted), Joanne Greenburg (I Never Promised You a Rose Garden), and others provide key insight. The collaboration of Dr. Anne Harrington, Professor of the History of Science at Harvard University, provides a compelling backdrop of the history of stigma.

Created by Lois Oppenheim, Ph.D., Alice Maher, M.D.
Directed by Sheryll Franko
Produced by Hot Stove Productions in association with Falling Awake Productions

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.”)

I wish I was (more) dysfunctional

From very early in my life I had many different problems. I started having asthma when I was 2 and a half and I never spent more than a week in daycare with other children. Every year my mother would enroll me but, even though I have no memories of those times, I suspect we both suffered from separation anxiety. I was shy and had a little social phobia. My mother overprotected me and didn’t equip me with the tools to go out into the world, so being away from home without anyone familiar brought me so much anxiety I would soon fall ill with something. When I turned 5 and it happened again, my mother started panicking. The next year I would have to start school no matter what (homeschooling is not really an option in my country). So after talking to my pediatrician, he gave her the number of a child therapist.

From the age of 5 to the age of 10 I went every week to see this therapist. I have very few memories of these sessions (which is weird considering they span for a period of 5 years) but when I try to look back the feeling is that I was generally happy there. And I did make some progress. I had no trouble at all when I started school at the age of 6, I made friends on my own, asthma went away around 7 or 8.

However, all these years later when I look at myself and my “collection” of illnesses I wonder what was it that therapy did to me. I think that all that it did was make me functional, while it did nothing about the underlying problems that had resulted in me being a very troubled child. For instance, I don’t let anxiety and fear stop me from doing things that I find challenging, but I still get anxious, and those anxiety symptoms have been taking a toll, eroding my entire system. Still, I’m the epitome of functional. No one knows I’m sick if I don’t tell them, I work full-time as a copy editor, I study at night, I exercise, I see my friends and family, I have a lot of interests, I keep my apartment as clean and tidy as possible, I manage insomnia, depression, endometriosis and multiple sclerosis as best as I can… I am so functional and apparently so normal that when I do complain about something no one really believes me. Sometimes not even doctors, which is probably the reason why I went for so many years without a proper diagnosis, proper medication and proper support.

But I’m also the epitome of troubled. My functionality has been disguising a lot of issues that date as far back as my early years and go on up until now. And the clues were all there. Coming from a family with a history of mental illnesses such as schizophrenia, bipolar disorder, addiction, and depression should have raised a few eyebrows. But no. They looked at me and saw this gentle harmless young woman who wouldn’t want to be any trouble. And me, I was too puzzled to even be able to make sense of things, too scared to trust people.

So today I wish I was a little more dysfunctional. Maybe people would have taken me seriously. Maybe this wouldn’t have been hurting for so long.

Second Opinion

Second opinions are of great importance when we’re talking about delicate decisions. I have two neurologists and I always see both when a change in medication or other therapy is being considered. Last year, however, a second opinion was even more important when a cyst was detected in my left ovary. It was over 4 centimeters. After it was confirmed that it was an endometrioma and I was subsequently diagnosed with endometriosis, my doctor wanted to operate me right away. She told me that, even if it had not grown between the first ultrasound (the one that detected it) and the second (the one that confirmed it), it wasn’t going to go away, so they had to remove it.

I went to ask for a second opinion, because I wasn’t going to let anyone cut me open without being sure it was really necessary. The second doctor I saw wanted me to try medication before making a decision. So I took the medicine he prescribed and after a while I went for another ultrasound. The cyst was smaller. It was half the original size. He told me that, even if this medication proved not to be working, there were still other options before going for surgery. So I’m currently maintaining the prescribed treatment and happy about it.

Now I’m aware that every situation is different and some situations may really require surgery. But I’m also aware that I was told the cyst wasn’t going to go away and it’s now much smaller. If I hadn’t seen another doctor, I could probably have part of my left ovary cut out by now. So my advice would be to always look for more information before making such a decision.

Naming things

Yesterday I met my new therapist. My old one is moving to another country, so she trusted my files with someone whose work she’s known for a long time.

We started talking, and for the first time I heard the story of my life being given specific and scary names. She said I had a lot of symptoms of post-traumatic stress, and that a lot of events in my life could be considered traumatic. I always thought post-traumatic stress was something only people who had survived war, natural disasters, physical or sexual abuse would experience. Turns out the definition of trauma is anything that threatens one’s survival, and that can include for instance the loss of a close relative in the early years of a young child, especially if the child doesn’t have a secure attachment to the parents and doesn’t have the emotional language to cope with it. That being said, my life has a series of minor traumas and at least three events that, if not considered major, are at least traumas written in bold. The fact that I’m a hypervigilant and have had trouble sleeping since my teenage years is nothing but a consequence.

Then I learned that I had at least two dissociative episodes in my life. One when I was 5 and had to be hospitalized because my legs went numb and I couldn’t feel them or move them, and the other after I turned 20 and suffered an episode of transient global amnesia and failed to remember stressful events in my then recent past. Even my recent state of daydreaming (see previous post) is a form, though mild, of dissociation. To me, “dissociation” and “dissociative” are scary words, so I felt apprehensive when I heard her saying that.

I also felt that returning to therapy after a little hiatus brought back all the resentment, anger, and fear I carry with me and that have been anesthetized through daydreaming and being on a break from therapy.

Overall, I feel like a car when you step on the accelerator with the hand brake pulled up. The engine roars and the rotations in the rev counter go up — and that’s my survival instinct, all ready to go and fight and scream… But the car isn’t really going anywhere, is it?

I’m still kicking it

Sometimes I still get a little down. Sometimes I still feel like crying. And sometimes I still cry late at night. The last four years of my life have been extremely hard and I still can’t help but wonder where exactly all those hardships were meant to lead me, what exactly those hardships meant to tell me.

2010 and the most part of 2011 were all about heartbreak, disputes with family members, and finding, buying and building up a little apartment where I could hide. I believe the strain and prolonged stress of all this ultimately led to the exarcebation that had me diagnosed with multiple sclerosis in late 2011.

10 months of treatment with interferons ensued. And that was hell. The side effects of the medication were worse than the symptoms of the disease. No paracetamol could help me. It just didn’t do anything. And when I finally changed the medication and things started to settle, some months later I was diagnosed with endometriosis and told I had to undergo surgery to remove a cyst in my left ovary. Fortunately the surgery ended up not being necessary, but until more medication and tests confirmed it I lived in fear and anxiety.

Recently I met someone I developed a little infatuation for. I don’t think he’s interested, but my mind? My mind is all about castles in the air and fairy tales. I understand why my mind needs to go into a sort of trance and daydream as if its life depended on it. After all, the past years have been so dark, bleak, and grounded. But I’m not 15 anymore. I’ve known disappointment. I’ve known reality checks. I don’t want more heartbreak. I’ve lost people because of my diagnosis. Because they didn’t understand. Because they didn’t want to understand. And I got a little too tired of feeling I needed to explain myself to them and apologize for not being as healthy and “normal” as they wanted me to be.

I’ve been kicking depression out of my life, trying to focus on being well and holding on to all the positive things I have. And I’m still kicking it. But sometimes, when in my mind someone new holds the promise of better times, I feel myself going down again. Because I’m not even sure he remembers my name. I just made that promise up.

Epstein-Barr Virus Connection to MS

I had mononucleosis when I was 18, during my freshman year in college. For two weeks, I had sore throat, temperature, and the lymph nodes in my neck were swollen. The blood tests confirmed it was indeed mono, and for several months after my initial symptoms the antibody count remained high, suggesting my body was still fighting the infection.

I never gave it much thought, although I remember two or three years later, still in college, telling a friend of mine that I felt my energy levels never went back to normal after that. It’s like the fatigue that comes with mono never left me, and it’s still with me today.

When I was diagnosed with ms and started reading about it, the connection with the Epstein-Barr virus came up, and I felt that it made sense, at least considering my history. It’s not that everyone infected with the virus will develop ms, but being infected with it under certain circumstances (i. e., as an adult) and combined with other variables (genetic predisposition, chronic stress, etc) may produce such outcome.

Recent research has been shedding even more light on this connection.  A 2012 study proves “the virus is involved in a manner more sophisticated and subtle than previously imagined, and may offer new ways to treat or prevent the disease.”

Even more recently a new study pointed out that ms relapses occur when the Epstein-Barr virus is active.

More interestingly, scientists came up with the hypothesis that ms could be caused by a retrovirus. Retroviruses are remnants of viral infections caught by our ancestors that are passed on through our genes. They are called “fossil viruses” and up until recently they were thought to be harmless. However, research has revealed some retroviruses may play a role in several autoimmune diseases.

Based on these pieces of evidence, scientists are looking at new and promising treatments for multiple sclerosis and other disabling conditions. So who knows what possible future therapies may be in store for us?

Links to the articles: