It’s all in your head

I’ve just finished a book called “It’s all in your head: Stories from the frontline of psychosomatic illness”, by Suzanne O’Sullivan. I picked it up because it is relevant to my PhD, but it turned out to be a very interesting read and one that’s made me think a lot about my own health. It’s quite controversial, there are bits I don’t agree with, and some places where I think the author shows a naivety that is not uncommon among western doctors. However, it really was fascinating and made for easy reading.

I want to briefly digress with a game. I was first shown this during my psychology degree, and it blew my mind! It only lasts just over a minute, but you can read on if you’re not interested. I just wanted to include it for a fun illustration of the power of the mind.

Anyway, back to the book. Suzanne O’Sullivan is a neurologist specialising in psychosomatic illness. A psychosomatic illness is “a disorder characterized by physical symptoms of psychic origin”. I.e. physical symptoms that are considered to be caused by the mind. This dichotomy between mind and body really bothers me. Surely all illnesses involve both the mind and the body, to some extent? Depression is a mental illness but fatigue and appetite change are part of the diagnostic criteria. A heart attack is a physical event, but a period of intense stress or anger can bring one on [1]. Our mind and body are so intertwined that this continuing attempt to disconnect them just seems ridiculous.

The book contains a series of case studies of patients Suzanne O’Sullivan has seen, with a range of debilitating physical symptoms that have been diagnosed as psychosomatic. The wide range of symptoms are quite incredible: seizures, gastritis, migraines, tinnitus, loss of eyesight, paralysis. Patients have given up work, are bed-bound, have spent years undergoing hospital investigations, surgery, taking harsh medications. One thing the author does well is describe just how difficult life has and continues to be for these patients. Their symptoms are not ‘pretend’, they have genuinely disabling symptoms that affect their lives enormously. The core theme running throughout is that, regardless of the individual pattern of symptoms, these patients are at their wits end, desperate to have a diagnosis and a way forward.

This part of the book I can really relate to. My health problems continued for years before I got some answers, and having medically unexplained physical symptoms is difficult for so many reasons. Not having a diagnosis or label makes it hard to explain to other people. It means that you cannot research your own illness, and therefore you feel completely uninformed about what is going on in your body. No diagnosis means, almost inevitably, no cure. It is upsetting, stressful, embarrassing and frightening to have disabling symptoms for which your doctor can find no explanation.

The point in the book is that the search for a physical cause can in itself prolong suffering. Suzanne O’Sullivan says that, once people accept that their symptoms are psychosomatic, they can work with a psychiatrist to understanding the underlying cause, and therefore work towards getting better. Which, surely, is what all of them want? It’s an interesting point, and indeed in the book she describes patients who do get better, and whose quality of life improves hugely through working with a psychiatrist. She makes a case that this is nothing to be ashamed of. The sooner we as a society stop giving less weight to mental health than physical health, the sooner we can all accept the influence of our mind on our body, and we can all work towards living a healthier life.

If someone told me that my symptoms were psychosomatic, that there was no physical cause for them and that I should see a psychiatrist, would I do it? Actually, I think I would. In fact the book has got me questioning whether there could be more of a psychological influence to my illness than I realise, and whether it’s something I should consider. However, I do still have a problem with this way of thinking. Because, at what point should you stop looking for a physical cause? I did get a diagnosis, and a physical cause was found, I have chronic reactivating Epstein Barr which is shown through the particular types of antibodies present in my blood. Actually this is one of the parts of the book that irritates me. The author makes a (very brief) reference to EBV when she discusses chronic fatigue syndrome, stating that since most of the adult population has had it at some point in their life, most people will have EBV antibodies in their blood and therefore EBV antibodies do not mean anything for CFS. This explanation is scientifically incorrect. There are multiple types of EBV antibodies, and the pattern of antibodies demonstrates whether the person has chronic EBV. The bloodwork of someone who has continuous symptoms caused by EBV will be different to the bloodwork of someone who contracted it many years ago and made a full recovery. This is well documented in scientific research and I could pull out many, many papers to this effect. She also makes a comment later in the book that is quite derogatory to people who believe they have food intolerances, and makes a statement that again suggests she does not understand the latest science.

Now, she is a neurologist specialising in psychosomatic illness. She’s not an EBV expert or a food intolerance expert. No-one can know everything, not even doctors. However, it is exactly this attitude that frustrates me about western medicine. There is a belief that the doctor knows best, that their medical training is more important than the patient’s own experience of their body. Despite all of the knowledge gained by science, there is still so much that science doesn’t know. That is exactly what keeps scientists in the job (and exactly why I love working in it) – there is always more to learn. Just because something isn’t recognised by medicine currently, that doesn’t mean it won’t be recognised in 5 years time, and it is arrogant for any doctor to think that what they know now is everything there is to know.

And this is where I struggle with psychosomatic illness. On the one hand, if psychological treatment can help improve a patient’s quality of life then that is great. Clearly physical symptoms CAN originate in the mind. But does this mean that just because a physical cause for someone’s symptoms has not yet been recognised, that they MUST originate in the mind? In any case, the general take-home message of the book is one I definitely agree with. The mind and body are not distinct. We all need to accept that the mind can make us sick. We so easily accept that emotions can affect our body; no-one questions that when we’re happy we might laugh, and when we laugh we make a noise, our breathing changes, our body shakes, the muscles in our face contract…and that these changes happen largely out of our control. So why is it so hard to believe that psychological factors might make us sick?

I have been thinking a lot about this over the last few weeks, about how my own illness may be influenced by my mind. I think it is easy to get defensive about this. For whatever reason, we don’t want to accept that our mind may be influencing our bodies. By accepting that, you are somehow implying that you can control it, that you should be able to ‘snap out of it’ or that you are choosing to be sick. However, if I want to stay true to my own beliefs, to the things I have written about in this post, then I must be open-minded to the idea that those beliefs are relevant to my own situation. Blog post on that coming up.

 

[1] Mostofsky EPenner EAMittleman MA. Outbursts of anger as a trigger of acute cardiovascular events: a systematic review and meta-analysis. European Heart Journal 35(21):1404-10.

The advantage of disadvantage

I recently watched a video of Michelle Obama giving a speech to students at the City College of New York (link here: http://qz.com/700823/michelle-obama-told-graduates-of-the-poor-mans-harvard-that-living-without-privilege-is-an-advantage/ )

The general message was this: facing adversity is an advantage, not a disadvantage. It reminded me of a book I once read called David & Goliath, by Malcolm Gladwell (well worth a read FYI!). It is a series of stories of what Gladwell calls “ordinary people confronting giants”; people facing all kinds of adversity and disadvantage. I think his message goes a little bit further than Michelle’s. I wholeheartedly agree with her argument that facing adversity makes you stronger, allows you to handle setbacks and makes you better equipped to deal with challenges in the future, giving you an ‘edge’ over those who haven’t faced such adversity.

But in David & Goliath, Malcolm Gladwell’s argument is that being the underdog in any given situation fundamentally changes you. It opens doors, creates opportunities, educates, and allows you to achieve things that others might deem unthinkable. The advantages of disadvantage, he says, go well beyond just making you more resilient.

I read this book about a year ago when I was at a real low-point with my health, and the message behind it really impacted me. It allowed me to reframe my sickness and see the situation in a totally different way.

Now let’s get this straight: I’m not trying to polish a turd, chronic illness sucks. Actually, all illness sucks. Anyone who’s ever had a cold, a sore throat, a tummy bug, an injury, surgery, depression, pain – in that moment when you are suffering, it’s hard to think about anything else, it consumes you. I think, therefore, that even those who’ve never experienced chronic illness can still picture what it might be like. Imagine that cold/tummy bug/injury coming back over and over and over again, a permanent parrot on your shoulder, a constant threat of illness and pain that could strike at any moment without warning. If I could choose to go back and live the last 12 years of my life without chronic illness, I would absolutely be there in a heartbeat.

But, reframing my illness to focus not on how bad it is or how unfair it is, and instead thinking about the advantages it has brought me, has been massively helpful in my ability to deal with it and stay emotionally healthy. And I don’t just mean superficially telling myself what a wonderful thing it is to be sick, that would be stupid. I mean really thinking about all the positive things that have happened as a result. And the truth is, there really are a lot of positives. I would not be the person I am today if it wasn’t for chronic illness. I mean, I would literally be a different person. It has totally shaped my entire adult life, both who I am and the things I have achieved. And honestly, I quite like who I am, and I quite like my life too.

These are just a few of the examples of positive things that have come from my illness:

  • It has made me extensively research the effect of nutrition on health and illness, and has therefore led me to a way of life that is infinitely healthier than the one I was leading a few years ago. Chronic illness or not, taking good care of our bodies has to be a good thing, right?
  • It has made maintaining friendships quite difficult at times, which therefore means that the friends I have now are all people who are patient and understanding, who don’t pressure me into doing things I can’t do and who try their best to support me in various different ways.
  • Ok, this one might seem a little ridiculous. But I am bloody good at crochet! I started learning to crochet last year when I was unwell a lot and I could no longer do many of the things I used to enjoy (running and playing music were the two biggies). So to fill my time I taught myself to crochet using youtube tutorials. Well, not to blow my own trumpet but I’m pretty darn good at it now so, two fingers to you EBV.

These are just a few examples. There really are many, many more. So, to anyone reading this, I encourage you to reframe your difficulties. Of course, adversity sucks, it’s human nature to want to avoid unpleasant situations and feelings. But no matter what the situation, I promise you that somewhere in there there is a positive to be had, and thinking about the situation from a different perspective may just make it all feel a little less overwhelming.

 

The emotions of chronic illness

It seems strange that in deciding what my first blog post should be, I have focused on the emotions rather than the physical symptoms. I am a bit of a keep-it-all-inside kind of person. Battling with this illness for 12 years, friends have come and gone, relationships have ended, that’s just the way of life. There is only really one person who has been there through it all, and that’s my mum. So I suppose you get used to dealing with it all yourself. What’s the point of talking to someone about how you feel when they can’t possibly understand what you’re going through, and when they might not be in your life anymore come next week, next month, next year?

When I’m sick, all my energy is taken up with the sickness, so that talking about how I’m feeling becomes even harder than normal. I’m sure there’s a primal, physical aspect to that – your body needs to preserve energy to fight the infection, right? Social chit-chat is definitely very low down on my list of priorities when I’m feeling sick, which must be pretty hard for my loved ones to deal with sometimes.

Chronic illness is a constant cycle of emotions. When I’m sick I’m filled with sadness, despair, hopelessness, disappointment. When I get better there’s happiness, excitement, hope, but there’s still anxiety, fear, worries about the future.

I am always seeking new information that may help me – new supplements, a new diet, a new medication, a new doctor. But sometimes that information can be overwhelming. I have read about so many different diets that might help EBV. No gluten, no dairy, paleo, vegetarian, autoimmune protocol, low sugar, low carb, and my most recent discovery – low arginine (blog post on that coming up). Then there’s the supplements: multi-vitamins, fish oil, monolaurin, cordiceps, colloidal silver, lysine….I could go on and on. In theory, all this information is great. But where the hell do you start when you are all on your own with a million different things that ‘might’ make you feel better? How long do you try something before concluding it hasn’t helped? Do you do one thing at a time or just bung them all in there and hope for the best? This is where my scientist-researcher brain probably makes life harder. How can it be a controlled experiment with so many factors at play?

So then comes the despair and hopelessness. How can I possibly get better if I have absolutely no idea what might actually help? In science you’re always taught to think about your sources. A peer-reviewed academic publication is a more reliable source than a random comment from one person online. But what do you do when 100s of people say that xyz has helped them with their illness? Is it worth taking the shot, even though your doctor would probably laugh in your face if they knew what you were trying?

And then I feel angry that I am spending so much time and energy researching these things when I could be enjoying life. At what point does information-seeking become obsession? When should you let go and accept the situation for what it is? It is a fine balance between not giving up the fight for good health, and not aimlessly searching for a cure that doesn’t exist.

But the worst emotion, the absolute worst, is loneliness. I am very lucky to have a wide support network of friends and family. But none of them have experienced chronic EBV. Almost all of my friends see me only when I am well, so they truly have no understanding of what my life is really like, and I can’t expect them to. Even my closest loved ones still don’t have to experience it first-hand. No-one else can share my physical experience, it is mine and mine alone, and that is a lonely old place to be. I think that is why I spend so much time researching online. There is a strange comfort in reading a story that mirrors your own, in realising you are not alone. At least I can be thankful of living in the age of the internet, where I can connect to other people who are sick too.

In fact, I have a lot to be thankful for. Love, support, a career, a roof over my head, and a body that, despite its flaws, still allows me to practice yoga sometimes, or feel the sand between my toes. I am not sick all the time. The unpredictability of how and when I’ll be sick is one of the things I find hardest, but at least it means I have days where I can function like a normal human being. In fact, at the moment, I have quite a lot of those days. I get to play with my nieces, practice my headstands, make love to my boyfriend (sorry mum). And chronic illness at least means that I will never take those simple pleasures for granted.