From InterAction 95, Spring 2017
Ed: Because of the complexity of the illness, its fluctuating nature and the wide spectrum of symptoms, different things work for different people. Action for M.E. does not recommend any individual treatments or management approaches for people with M.E. Instead, we offer information to allow people with M.E. to make informed decisions. This article is about the personal experience of one person with M.E., and is not intended as medical advice.
For many people with M.E., the daily struggle with symptoms and lack of understanding from friends, family and professionals can cause intense anxiety. Finding ways to manage anxiety won’t cure your M.E., but it can help alleviate the psychological consequences, as Christopher Ritchie discovered.
M.E. and panic attacks can often go hand in hand. Why? Because those worrying symptoms that seem to come from nowhere, changing and intensifying without any warning, can be scary. And when you’re scared, everything can seem worse; worse still when a doctor or friend or colleague tells you “it’s all in your mind.”
It’s extremely important to me that we shake the idea that M.E. is a psychological illness. Anxiety, I believe, is one of the psychological by-products of M.E., along with the depression that some ignorant people believe is the root of the disease. As any person with M.E. will tell you, that’s nonsense.
This is my tenth year of having M.E., and my symptoms are rated as being mild to moderate. But in the beginning, I had no diagnosis; in fact it was three years before I could definitively put a name to what was happening to me. I would frequently (daily) feel tightness in my chest, and I would wake up during a nocturnal panic attack at least once a week. Thatdidn’t stop when I got my diagnosis though. It certainly helped, but because M.E. was (and still is) a mysterious disease, and because my GPs consistently refused to take me seriously, I was effectively in the same dark room as when I’d fallen ill in the first place.
As the years of dealing with this horrible illness went by, I had become not only highly anxious in reacting to symptoms but fearful of other things: what if M.E. was masking a more serious illness like cancer? What if I was out driving and I started having a heart attack? What if I passed out in the bath and drowned? This was all, I came to realise, a side effect of my M.E.
The NHS website states that psychological therapy and medication are used to treat anxiety. With my own M.E. experience, I simply cannot tolerate medication of any sort. Antidepressants were tried and, well, never will be again. Even antibiotics seem to work in the opposite way with me. I can’t even manage a Nurofen. Psychological therapy, however, can come in many forms. For me, NLP turned out to be the solution I was looking for.
Changing the brain
It all started with a chance meeting. While accompanying my young daughter to a school club, I was making small talk with one of the other dads there, Geoff, and discovered he was a practising neuro-linguistic programming (NLP) practitioner. I revealed to him that I had a phobia of spiders. He said he could help me with that, so without much ado I arranged to see him a few weeks later.
At the start of our session, Geoff explained to me that the way the brain works is simple: it takes the shortest route from A to B, and if A is the spider and B is the default fearful response it has created for whatever reason (a reaction to a trauma, for example), then there is likely no other potential result. NLP effectively inserts a modifier between A and B that alters the B response. Geoff took me through this process of modification to change my brain’s response from its default – fear – to indifference. Within an hour my phobia had gone.
Skip ahead a few weeks, and I found myself in an awful situation where the mere thought of being on a fast A road was crippling: tight chest, racing heart, hyperventilating and so on. It’s what some of us can identify as symptoms of a panic attack. So I spoke to Geoff again, and asked him if that was something he could help with. Yes, he said. Phew, I thought.
The basis of this NLP was a ‘change of state’. Imagine instantly switching from sad to happy. That’s essentially what it is. Geoff taught me how to do this in relation to my anxiety: I could trigger, at will, a change of state from anxious to calm. When you understand the nature of anxiety, that being the brain’s response to what it considers a traumatic or potentially traumatic experience, it should be easy to see how NLP can tackle anxiety at its source.
Geoff employed his knowledge of NLP and at the end of it I found myself calmed. To test my ability to change my state I took the challenge, joining a busy A road and just getting on with it – a task most people take for granted. I triggered Geoff’s trick – and hey presto!
Now, three years later, anxiety plays almost no role in my life whatsoever. If I find it creeping in, I just use Geoff’s trigger. My M.E. symptoms, whatever they may manifest as, are no longer as intense or all-consuming. Yes, I’m still in pain all the time, and I still get all those same symptoms, but with the anxiety gone the pain is not as impactful and my reaction to those symptoms not as overwhelming as it used to be. Can NLP help cure M.E.? No, I don’t believe it can. But I do believe that it can lessen its impact, physiologically and psychologically. If you experience the horror of panic attacks, then imagine a life without them. That’s the life I’m living now.
There are, of course, many other ways to tackle anxiety, and what works for one may not be right for another. The Mind website discusses counselling and therapy, and something many people with M.E. will be familiar with – the controversial cognitive behavioural therapy (CBT). While it may not necessarily help with the physical symptoms of M.E. (at least not in my experience) there is evidence to suggest it can help mitigate the psychological consequences.
Mind notes that the National Institute for Health and Care Excellence (NICE) guidelines suggest doctors “should offer you other kinds of treatment for anxiety first” before prescribing any drugs. Antidepressants in particular can carry the rather unpleasant potential side effect of increasing anxiety, yet in my experience some doctors are too quick to prescribe them for a range of conditions.
With the NLP model, there are many techniques that can be employed. Search the internet (and particularly YouTube) and you’ll find all sorts of lessons and videos which aim to teach NLP techniques you can do on yourself. I cannot say whether these would be more or less effective than those Geoff taught me, but if anxiety is holding you back from living your life to its fullest potential, there’s no harm in having a look.
Remember: anxiety is not something you have to live with. It’s something I very easily removed from my life, and I urge anyone who’s living with it to do the same.
Managing anxiety and panic attacks: What have other people with M.E. found helpful? Here are some comments from our Facebook page.
Stefi Ingham I look at nature when I am stressed. At home I look for my cat to calm me. Outdoors, the birds fly and sing. If it’s a stressful situation like going through a train tunnel, I have trained myself to look at the most relaxed person and it calms me down.
Lucy Patricia Breathing from my diaphragm helps me as it tends to slow my breathing and it means I breathe more efficiently. Also a simple body scan, paying attention to each part of my body in turn, becoming aware of what bits I’m holding tense and letting the tension go as I breathe out.
Paul Marks Joffe There’s a simple grounding exercise that I’ve found particularly helpful: being aware of wherever you are and naming five things you can see, four you can touch, three you can hear, two you can smell and one you can taste. It’s quick, it focuses your mind away from unpleasant sensations, it’s helped me get through panic attacks and even stave off a few before they got too bad.
Rachel Dean Putting something on your earphones that you like, to take your mind off it (but I understand many people can’t tolerate noise). Going somewhere calm, or even telling yourself, “it’s ok, there’s nothing to hurt or harm you and the pain will pass” helps.
Polly Maynard Music and singing helps me – if you’re starting to hyperventilate singing is good because you have to regulate your breathing to sound the words.
Nancy Kirk Had a massive panic attack in a hospital recently. A nurse handed me a paper bag and started telling me to breathe in and out to her counts. I thought I knew best and kept trying to stop, but it really, really helped. She gave me a lovely stash of bags to take away, and I now take one everywhere!
Amphelia Strange A great book is so helpful! I also swear by keeping a pencil and crossword or puzzle book on hand, especially if I’m travelling on trains or in crowded spaces.
Glen Buchanan Meditation and mindfulness. They’re super easy and a great stress reliever. Even if you’re not stressed, it has lots of health benefits. Headspace.com* offers a really good guided audio course, and the first ten sessions are free. Or bemindfulonline.com offers a video-based, six-week course for £60. (Read Glen’s article about meditation and mindfulness in InterAction 93 p 32.)
Stephen Buckley, Head of Information at the mental health charity Mind, says:
People living with long-term physical health conditions can often also develop mental health problems. It is really important that you take steps to look after your mental health as much as your physical health.
Symptoms of mental health problems may vary from person to person, but there are some common signs to look out for. For example, someone with anxiety might have problems sleeping, feel numb or restless, have a sense of dread, or experience physical symptoms such as nausea, pins and needles, sweating or irregular heartbeat. We all experience down days, and usually these feelings will pass without having any major impact, but if the feelings don’t go away after a couple of weeks or get worse, it could be a sign that you’re experiencing a mental health problem.
If you think you might be experiencing a mental health problem or your feelings and emotions begin to interfere with everyday life, you should try to talk about how you are feeling with a friend or family member. Speaking to your GP is often the best course of action as they can talk you through the best support for you. This might seem daunting, but it’s the first step to getting the help and support that’s right for you.
Mind has produced a guide on how to speak to your GP about mental health. Visit www.mind.org. uk/findthewords or call the Mind Infoline on 0300 123 3393 for more information.
About the author
Christopher Ritchie is an editor, musician and devoted father living in Walton-on-Thames, Surrey. He has lived with M.E. for almost ten years. As a published author, in his spare time he writes novels (available at all good online book shops). He also produces music, individually and as part of the experimental group, Aural Lab. If you’d like to ask Chris more about his own experiences, email firstname.lastname@example.org with ‘NLP’ in the subject line.