ME/CFS has ruined your life, and it’s all your fault. If only you could have noticed the signs earlier. Now you’re stuck. You’re never going to get better. It’ll be years before you can get back to where you were before. And you were doing so well last week but you just had to go and meet Karen at that artisan café that turned out to be a little further than you thought and involved that walk through the park in the cold and rain. Now you’re bed-bound again, with another shitty documentary on something it’d be hard to care about even if you could absorb what was going on. Moron.
Ever have internal thoughts that sound something like that? Well, you’re not alone.
It’s normal to feel angry, frustrated, despondent and hopeless when suffering with ME/CFS. And that’s okay. Who wouldn’t feel that way when you have a condition that deceives you into thinking you’re better only to trip you again up like a sadistic playground bully.
We also have a tendency to direct these feelings inwards.
Blaming oneself is a common reaction to an adverse event: accidents, break-ups, loss, and in this case, developing a chronic illness. With ME/CFS, it’s easy for us to see our condition as a personal failure. From self-blame, it’s a slippery slope into despair, more self-blame, and eventually depression. Yes, cheerful stuff.
In short, ME/CFS can negatively impact our emotional health and wellbeing, and our relationship with ourselves.
But, the key point here is that this sort of negative thinking is actually really bad: It causes stress and will make your symptoms worse!
Wait, really? You may ask. Well without going into too much detail, this link between emotional and physical health has been explored and is supported by a whole bunch of medical research. Stress puts our body into fight or flight mode, which continues to put pressure on our bodily systems and stops them from working optimally [1][2]. With ME/CFS, the bodily systems have been over-burdened for so long that our nervous system has become hyper-vigilant to threats and starts reacting badly to physical and emotional stimuli, making us feel the way we do. That malaise we feel is our nervous system’s ‘maladaptive stress response’ to things we ordinarily wouldn’t be phased by [3][4]. This is why stress brought on by anxious thoughts and emotional turmoil can lead to a flare-up or a persistence of symptoms.
So, the point is: Emotional wellbeing and an absence of stress are key to improvement and eventual recovery from ME/CFS.
This is called being in a ‘healing state’, where our body is not in a state of ‘alert’ or under stress. It is in a healing state that our nervous system can calm down and our malaise will subside.
Wait, I can’t be frustrated when I know I can’t live the life I used to and which I desperately miss? I need to be all smiley and positive when I’m resigned to being a vegetable for a few days after I walked too fast up some stairs?
No, not exactly.
But you do need a certain mindset to enter into a healing state, and make sure that you return to it after a period of stress. There are a number of things you can do to get into this mindset, and which will help you cope better mentally with the trials and tribulations of ME/CFS when it’s at its worst:
- Accept your situation: Acceptance is necessary first step towards improvement. But also the hardest. Let go of the ‘what if?’ ‘I should have done x’, ‘Was it X that brought this about?’ This sort of thinking only perpetuates anxiety, stress and self-flagellation. Remember, this was never your fault. You have a serious, debilitating condition that needs to be taken seriously. Your symptoms are your body’s way of telling you that something is wrong. Its time to accept that you can’t live your life as it was before, and listen to and accommodate your body’s needs into your life. Only when you let go of the past and surrender to your body will you be able to enter into the healing state necessary for improvement.
- Adopt a long-term perspective: A real trap that we risk falling into is trying to rush our recovery because we are desperate to get back to 100%. The ‘next week I should be better, maybe in November I’ll be able to go for a run, let’s aim for that’ thought process is one of the driving forces behind the ‘boom-bust’ cycle that defines the condition. On top of frequent crashes such short-termism drives anxieties around recovering in time and leads to more stress, which we know is bad for you. Remember, statistically and scientifically you will get better with time and care. So relax your mind, don’t rush things when you’re feeling better and think of your life long-sightedly. This period is a minor blip in your long and fulfilling life, like a single piano key on a long keyboard.
- Focus on what you can still do: Think about the things that you enjoyed doing before and which you can continue to do now, not the ways your life has been limited. Think about the new things you can start to get involved in with a less active life – Still-life drawing, horticulture, a new TV series, stock-investing, reading, origami, video-gaming, meditation, yoga, whatever – and frame this as an opportunity. Remember that despite your situation you can still do things that you enjoy and pursue new interests. Thinking about your life in terms of what is possible will help give value and purpose to it, cultivate enjoyment in your everyday, and dial down defeatist thinking.
- Stop obsessing over how you feel: Checking-in every 10 minutes to see how you feel is only going to make you more anxious. This is a subtle form of perfectionism, where tracking your symptoms after every thought or movement leads to a desire to have a symptom-less day, the impossibility of which makes you berate yourself and yes, feel more stressed. This kind of behavior can also push you towards isolating yourself from doing things and seeing people. You will occasionally feel bad and it will be frustrating. But when it happens, focus instead on maintaining an inner state of calm. This will in the long-term assuage those very symptoms that you spend a lot of time worrying about, and allow your body to heal.
With the right mental framework you can start focusing on getting better in a stress-free healing state. Granted, it’s hard to be stress-free all the time when we have commitments to work and family that naturally get us riled up. That’s just how life goes with its ups & downs.
But referring back to these points when times are hard is crucial in ensuring those downs bounce back to ups. Write some version of it down, a note-to-self for example, and keep it in your pocket as a cheat sheet if you have to.
Together with changes to your lifestyle, such as pacing, this will help protect and further your improvement so it’s a steady ascent to being the best version of you.
[1] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Prime –https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474682/
[2] Summary Review: The Dysfunctional Autonomic Nervous System in ME/CFS – https://www.meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf
[3] Dealing With Stress in Fibromyalgia and Chronic Fatigue Syndrome
[4] Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Symptom Severity: Stress Management Skills are Related to Lower Illness Burden – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837381/
What works for you? What ways of thinking have you found helpful in your journey? Please comment below
M.E., You and Fatigue 