This one’s for everyone because we all need to understand these illnesses better to tackle the stigma around them.
A functional disorder is one that is medically unexplained. No test is abnormal, no investigation finds any explanation for the symptoms experienced by the patient. Psychogenic/psychosomatic disorders are those with physical symptoms that a specialist suspects are psychological in origin.
Think of laughter. “It is a physical display of emotion, it’s mechanism is ill-understood, it is not always under our voluntary control, it affects our whole body, it stops our breathing and speeds up our heart, it serves a purpose, it releases tension and communicates feelings. Laughter is the ultimate psychosomatic symptom.” P315 as the author asks, if we can collapse with laughter, is it not just as possible that the body can do even more extraordinary things when faced with even more extraordinary triggers?”
The public and medical professionals who don’t fully understand these conditions contribute to the stigma that plagues these patients. Additionally, doctors from other specialities can do a great deal of harm with inappropriate treatment for a patient whose symptoms are psychological in origin. Because of the stigma around these conditions, patients think the diagnosis means the doctor doesn’t believe their symptoms are ‘real’. By reading this book, you begin to understand how psychological trauma can manifest as physical symptoms. Symptoms outwith the patients’ control that disable them as much as they would if the same symptoms had an organic cause. Symptoms just like MS, just like epilepsy, just like blindness, just like arthritis, like any other disease you can think of. The symptoms are the same. The only difference is the cause. These patients are not pretending, they are not imagining, they are not making up, and they are not putting on their symptoms. The brain is a complicated organ, much more so than any other. Our understanding of it is limited. And just like our other organs, the brain can become dysfunctional. We all respond differently to the same situation. And why should our response to extremely stressful events be any different? Some people’s brain produces REAL physical symptoms in response to psychological stress. So psychosomatic illness is NOT something the patient can control. Its not something they can turn on or off. They will have good and bad days but the presence of a good day doesn’t mean they are making it up or exaggerating it on a bad day.
So I’ll leave you with a question from p240: “can we give a disability that has its roots in behavioural or psychological factors the same respect that we offer to a physical disease?”
“Any chemical that can be broken down can be overproduced, or underproduced, as happens in the overactive or underachieve thyroid glad. In just the same way, sometimes the physical response of our organs to stress goes too far” p5
“Society is judgmental about psychological illness and patients know that.” p10 This makes it harder for patients to accept the diagnosis, knowing the lack of understanding that awaits them in the outside world. In turn this leads to delay in embracing the treatment and professionals who are the only people that can help them.
“I have met many people whose sadness is so overwhelming that they cannot bear to feel it. In its place they develop physical disabilities. Against all logic, people’s subconscious selves choose to be crippled by convulsions or wheelchair-bound rather than experience the anguish that exists inside them.” p15
“A person’s personality and their life experience mounds the clinical presentation, the response and the outcome of any brush with illness. If you take one hundred healthy people and subject them to the exact same injury you will get a hundred different responses. That is why medicine is an art.” p22
“Every week I hear the word real used over and over, as if something that cannot be measured cannot be real. But the world is full of things we cannot see but either know or believe to be real. Our thoughts are vivid and constant but nobody knows how they are generated; they can’t be seen or smelled or touched but it wouldn’t occur to us not to believe in them.” p90 Think of your dreams, your thoughts, your religion. None of these things can be measured or proved, but imagine if somebody told you your thoughts are not real.
“If I am pretending to be ill, the sophistication of modern medicine becomes a threat to me, and it was no threat to Yvonne or Matthew or Pauline. They could not stop their search [for organic disease] because they were looking for something that they were certain was there.” p148
“Yvonne [psychosomatic blindness] had told me how things were when she handed me the card she had made. A woman who wishes to lie and fake and fool wears dark glasses and carries a cane and stumbles about. That woman certainly does not draw a picture. Yvonne’s drawing was not evidence of guilt but of innocence and, at the moment that she handed it to me, it was I who could not see.” p175 I think this example shows the difficulty and the sensitivity in diagnosing and discussing psychosomatic diagnoses.
“Perhaps she felt she had not convinced me yet. I reminded myself that exaggerating to convince is not the same as exaggerating to fool. Some cries for help are louder than others if they have previously gone unheard.” p231 This one demonstrates what I think is the saddest part of these illnesses. Patients have not had any explanation for their symptoms by the time they meet Dr O’Sullivan and as a result often feel they need to convince her their symptoms are real. Imagine if you were made to feel that way.
Chronic fatigue syndrome is poorly understood to put it mildly. A full discussion of the possible causative factors is beyond the scope of this blog but it is interesting to note a few points from O’Sullivan’s discussion of it.
“I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome.” P238
“Perhaps sufferers cannot mount a sufficient hormonal response to stress when it is required of them. This might explain why stressful events, either psychological or physical, can trigger the illness and why those affected cannot recover when faced with stress.” p241
“The only treatment proven to offer at least some benefit to those with ME/CFS is a graded exercise programme and cognitive behavioural therapy (CBT). And Rachel was quite right, CBT is no magic bullet, it is hard work, it doesn’t help everybody and she had tried it before. I reminded her that if somebody with diabetes doesn’t get better with their first tablet, they don’t abandon the treatment, they try a higher dose. If someone with asthma does not get better with one inhaler, they try a second. ME/CFS is no different to that, some people get better with one course of treatment and some people need a second…as we talked I was aware that she didn’t really want a better treatment, she wanted a better diagnosis. And why shouldn’t the she? ME/CFS is a disabling illness, the treatment is laborious and slow, the outcome is often poor and for all that, outside her family, she would get very little understanding or sympathy.” p246
“Ask somebody with dicossiative seizures how they feel, and you may get the answer ‘tired’ or ‘cold’- neither answer contains anything of their emotional state. Perhaps those who deny stress do so because they do not feel stress, having converted it to something else.” p243
“Behaviour that seems irrational might make more sense if you could appreciate the purpose it serves. Sometimes we create conflict with others because the intensity of feeling it leads to makes us feel less lonely. To feel hated can be less distressing than to feel forgotten. Sometimes being with anybody is better than being with nobody. Sometimes giving up feels better than failing. Sometimes failing through illness feels better than just failing. The unconscious substitutions we make to protect ourselves do not make sense when we do not understand them fully.”273
Women are more likely to suffer from psychosomatic illness…Is this because women are hysterical? Or are men and women just different? “Women drink less alcohol and have fewer alcohol-related problems than men. Men are more likely to self- medicate stress with alcohol. Men are more prone to aggressive outbursts or high risk behaviour, and are more likely to be arrested, harm their children, and have affairs. So perhaps it is not a matter of one sex coping bettered complaining less, but rather a case of each suffering differently. On the face of it, women turn their distress inward and men turn it outward.” P285