From InterAction 90, summer 2015
Counsellor Joan Crawford explores how to help friends and family members understand the impact of M.E.
People with M.E. can experience disbelief in a variety of different settings, including within close social networks of family and friends. This can be a huge shock, leaving patients feeling traumatised by such a reaction from people they hoped would show understanding and compassion.
“I don’t bother talking about it anymore because if I do the room goes quiet and the subject is changed,” says Abigail on Facebook. “Silence says everything.”
However, having a grasp of the unseen (often unspoken) social processes and norms that influence how we behave, and how these interact, can allow us some insight into such disbelief. This then gives you choices about the best way to respond well. It is not generally understood, until it is pointed out to us, that society is often intolerant of:
Mostly people favour straightforward answers to complex situations, and we often unthinkingly use rules of thumb to achieve this. This can be a good use of time and resources. However, it can mean that people around us use unhelpful judgements about things they have not taken the time to think through.
In Jenni’s words, posting on Facebook: “Unfortunately the human race has a habit of discrediting anything that it doesn’t understand.” Social psychologist Melvin Lerner suggested that people can be biased towards believing in a just world. As a result, when there is a continuation of suffering (as is the case in chronic illness), people seem to be more prone to blaming the person suffering rather than offering a compassionate response.
This automatic need to believe in a just world (ie. individuals get their just desserts) can lead to an illusion of invulnerability in the believer. With M.E., the variability of symptoms and severity day-to-day can leave people close to the patient baffled.
Some mistakenly may think that this is all under the patient’s voluntary control. This reaction can understandably be taken personally, leading to guilt, lowered selfesteem, depression, fear of abandonment and grief.
As Kathryn told us: “Being doubted is crushing. You get given that ‘doubtful look.’ You socialise when you can on your ‘good’ days, but people don’t see you when you are very ill and alone.”
The effect of disbelief
When people doubt that we are really ill, or that we are telling them the truth about our experience, it can be perceived as an attack on our sense of self – who we are and our sense of our own identity.
Thus disbelief can be profoundly destabilising and intensely hurtful. The body reacts as if it has received a physical blow, stunning the patient into silence, unable to respond.
This can be confounded by the profound dysfunction of the regulatory control network within the nervous system, along with the immune and endocrine systems, affecting virtually all body systems (Tirelli et al., 1998; De Lange et al., 2005).
It may take people with M.E. days to recover physically and emotionally, leaving them feeling angry, frustrated and vulnerable. Moreover, when we are unaware of the aforementioned social processes, we can even internalise the disbelief and start to doubt ourselves, including who we are and if we are actually ill.
Responding to disbelief
On top of this, people with M.E. often experience cognitive dysfunction – better known as brain fog – which affects their ability to process information and their word-finding skills. Even though this is an integral part of the illness, it can lead to them feeling incompetent in their ability to be assertive and respond in ways they would have done prior to becoming ill.
Expectations play a role here too. Believing that you should respond quickly and assertively to disbelief increases the pressure on you. This can further hamper recovery and possibly undermine self-esteem.
It is not helpful to over-analyse past conversations and interactions, thinking: “I should have said something when he said I was X, Y Z.”
This unrealistic expectation only adds pressure, thus prolonging recovery. A more helpful way of thinking might include: “I didn’t like what s/he said. However, I need time to think about how to respond well to them in my own time.”
In fact, responding well in difficult circumstances, and in line with one’s own identity, can help to strengthen your self-esteem and rebuild your confidence. Taking the time to think through an appropriate response, that you can discuss in a calm and balanced manner later on, can also help you recover your sense of competence.
Don’t forget that you have the right to respond to hurtful behaviour, as well as the right to go back later on, when you are feeling better, to ask what the person meant, or to ask them why they felt they had the right to say what they said. Knowing that you can do this removes the pressure to respond immediately, and moves the discussion away from the heat of the moment.
What you are trying to do, in a calm and assertive way, is to encourage the other person to think carefully about the impact on you. Their new response is much less likely to be biased than the automatic, fast response they made to you earlier. Being assertive is about being able to communicate how we are feeling confidently and non-aggressively, and reasserting the boundaries with those around us – boundaries which may have been violated by someone else’s disbelief or misunderstanding. It may well be necessary to express ourselves assertively because not doing so may lead to increased anxiety due to our own needs not being met.
Sharing your feelings
By sharing hurt feelings with others, we open up the possibility that they can think about their behaviour, reflect upon it and choose to respond differently in the future.
We may find it helpful to practice self-coping statements such as: “I cannot convince anyone I’m ill who does not want to believe it.” Or: “Their disbelief does not negate the reality of my illness.” (Friedberg and Jason, Journal of Clinical Psychology, 2001).
These types of statements can be practiced and then used in real-life situations, when appropriate. Writing about hurt feelings can also help us to work through them. If you are feeling too ill to directly challenge someone, you could write to them to tell them about how hurt you are and why you felt it was inappropriate behaviour.
This method also allows you time to read through your response, so you can remove any aggression and ensure the tone is suitable. However, if the behaviour continues, we may well have to re-consider the value of that relationship to us.
As Nikki told us: “I’ve learnt not to keep trying to get them to understand. Instead I let in the people who love me, while people who upset me with their hurtful opinions are kept out.”
It’s also useful to be aware that not everyone close to us has the capacity to emotionally support us during our time of need, due to their own frailty. If this is the case, showing compassion for them may diffuse our anger.
Finally, it’s also worth remembering that we may need emotional support outside of our immediate circle of family and friends. One way this can be done is through sharing hurt with a supportive counsellor – see useful contacts for sources of trained and accredited counsellors – in a confidential space to gain new perspectives.
About the author
A retired chartered chemical engineer, Joan was misdiagnosed with M.E. in 2004 and is now receiving medical treatment for chronic infections from tick bites and some very rare immune deficiencies. As her health improves, Joan is retraining as a counselling psychologist and hopes to gain her doctorate level qualification soon. She has an MA in Clinical Counselling from Chester University and a postgraduate diploma in Cognitive Behavioural Psychotherapy.