How chronic illness affects everything… yes, everything

Recently, I have been feeling a little disconnected from the world. There is so much about chronic illness that anyone without chronic health issues would struggle to understand, that I find it difficult to really, truly connect with people. I know that I can’t expect anyone without chronic health issues to understand. I also know that even by talking (and writing) about how chronic illness affects everything, I may be creating further barriers between you versus me; us versus them; healthy versus sick. But I am ok with that, because this message needs to be heard.

Chronic illness affects EVERYTHING. I mean, absolutely everything. Before I had health issues, I could never have comprehended the scale of it. I could have understood that it must be crap to feel ill all the time, that it must take a toll on your mental health and your ability to do the things that you enjoy. I think that most people can understand that. But the day-to-day impact of chronic illness is unimaginable. This message is so important. It is important for others with chronic illness to hear this – it is hard, and I hear you my friends. But it is also for those without chronic illness to hear this – the magnitude of chronic illness is immense and so, if your friends who are sick seem to be struggling under the weight of it all, this might just be why.

Ok here are the things I can think of, off the top of my head, that are affected by chronic illness (for me). Some are pretty obvious. Others are darn right peculiar.

  • The beauty products I buy – must be organic with no parabens, SLS, phthalates, silicones etc. The skin is the largest organ in the body (at least that’s what we were taught at school – is that really true?). Well anyway, we have a lot of skin, and what you put on your skin is absorbed into your blood stream. I actually think that everyone should avoid standard off-the-shelf makeup and toiletries but, if you have pre-existing medical issues this is perhaps even more important. This means a limited number of shops I can get these products at and of course, they are a lot more expensive. The most painful product for me is suncream. Holy moly, non-toxic suncream is expensive!!
  • The jobs that I can apply for. This one I am really feeling of late. I am coming to the end of my PhD, and, like most PhD students, I am freaking out a little bit about what I’m going to do next. But, unlike most PhD students, I need a job that has flexible hours, the ability to work from home, a boss that supports those things, and where I can spend a decent chunk of my work time doing things like writing or reading, that don’t require communication or travel or other things that are very energy-zapping for me.
  • The dental work that I have done. Yes, seriously. I had a tooth extracted and a bridge in its place last year, when my dentist just wanted me to redo a root canal. Alas, root canals can apparently (mostly anecdotally) cause issues for people with chronic health issues and to be honest, whether that’s true or total beloney it doesn’t really matter; if there’s a risk of it making my health issues worse, I can’t do it. So, yeah, tooth extracted.
  • What I do in my spare time. Well yes that’s an obvious one. Mostly my spare time is spent doing restful activities like reading and watching tv, combined with gentle exercise when I can manage (I.e. walking), self-educating about all things health related (you would not believe the random shit I know), and cooking. Because everything has to be home cooked from scratch.
  • Where we go for dinner. On the subject of food, there are now, I think 3 restaurants where we can comfortably eat without it being an incredibly stressful experience. Places that have a flexible menu and staff that are patient and understanding enough to deal with “I’d like this meal but without the chips, without the sauce, without the bread, and with a salad on the side please!”
  • Where we buy our food shopping. We have two stipulations: 1) we have to be able to order home delivery, because the odds of me being well enough to manage a supermarket trip are not that great (so that rules out the cheap supermarkets); 2) they have to have a good selection of organic meat and vegetables, because that is essentially all we eat.
  • What food we buy. No ready meals, pizzas or chips here. There is virtually nothing we can eat that is easy. Everything is cooked from scratch.
  • What time I go to bed. Because I need 9 hours of sleep and even a couple of nights without it starts to affect me. 9pm is my bedtime, by the way.
  • What time I get up. Because meditating in the morning is really not optional if I want to try and keep my nervous system calm, which, of course is important for healing. And because rushing to get ready is about the worst thing for anyone’s nervous system. My morning routine is 2 hours long.
  • How often I see my friends. Not very often, in case you were wondering. When I am well enough, and when I have had a good enough patch of health that I am at least partly on top of housework and other life commitments. Or I’m so unwell that I’ve given up all hope of housework or other commitments, and I have a friend that is kind enough to come see me even though I’ll be in bed the whole time (I currently have one friend who will do this – I hope she is reading, she is a gem).
  • Who my friends are – people who I like and who like me but who are also patient and understanding, and know that plans are likely to be cancelled last minute at least 50% of the time.
  • How often we have sex. Sorry to the prudes reading this but, yeah, chronic illness affects this shit.
  • How we use our holiday leave. Most of our annual leave is used on doctors appointments. I am lucky I have a flexible job so that my routine appointments don’t need to involve official leave. But the bigger appointments require annual leave, and our holiday savings have been used on medical trips in the past.
  • Where we can travel. Somewhere where there are restaurants that cater for complex dietary needs; somewhere where everything is within a short walking distance; somewhere where we can take a small suitcase worth of medical stuff. Hence why next year we will be revisiting our favourite Greek spot that ticks all of these boxes!
  • The books I buy. This isn’t a bad thing by any means – I looooove books! But mostly they are health related books (which also isn’t a bad thing in my eyes – I love to learn about the body!).
  • The house we purchased – we were previously renting a mouldy house, which can have hugely detrimental health effects, particularly for people with pre-existing health issues, and for approximately 25% of the population who have genetic mutations that prevent them being able to effectively detox mould spores. We were so worried about mould exposure that we bought a new build, almost exclusively for this reason.
  • The arguments we have as a couple. Our relationship is pretty solid and I think my love will agree that chronic illness has made us infinitely stronger, both individually and as a couple. But oh Christ it is so hard on a relationship. He has to pick up more chores when I’m sick; I feel guilty when I can’t do stuff; he feels sad and stressed when I’m ill; I feel sad and stressed when I’m ill; we have to try and support each other while both struggling to cope ourselves. To every couple out there affected by chronic illness, I salute you.
  • How we spend our sundays. About half of our Sunday is spent food prepping for the week. Lunches, snacks and sometimes breakfasts. Because nothing can be bought on the go.
  • Our financial situation. This is largely unspoken about in the chronic illness world, or maybe just in the world generally. But I have no shame in saying, that we spend a fortune on stuff relating to health. Mostly food, because of all the reasons above. But also – beauty products (that darn suncream), supplements, having a cleaner (which, I appreciate, might seem like a luxury, but is actually a necessity), buying random things like water filters and paying for dental extractions! And these are just the day to day costs. We get substantial support with my treatment costs, which is the only reason we can afford the treatments I am having.

The magnitude of chronic illness is unthinkable. To those of you reading this who also are affected by chronic illness, I hope you understand that you are not alone. Keep going you brave, brave warriors. To those of you reading who are not affected by chronic illness, thank you for reading! Thank you for taking an interest. And thank you to those of you who provide support to me or to anyone else with a chronic illness. We could not do it without you.

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.