Anyone who watches the film Unrest on Netflix realises how many people are suffering in silence because of an invisible disability. It tells the story of a successful couple, Jennifer and Omar, who had this beautiful relationship. Jennifer develops chronic fatigue syndrome and starts an incredible journey of trying to understand what goes on inside her.
This understanding (or lack of it) then inspired her to start documenting the lives of people who have to live with an incurable, misunderstood, painful, invisible disease. One such condition is fibromyalgia.
The first few lines of this documentary explain it all: “If you say too little, they cannot help you. If you say too much, they think you are a mental patient.” For many, fibromyalgia is just an excuse not to turn up for work or for an event. But – as one of us knows from experience – it is not.
Fibromyalgia syndrome is a chronic musculoskeletal pain disorder having some or all the following conditions: muscle stiffness; increased sensitivity to pain; sensitivity to touch, light and sound; irritable bowel syndrome; problems with memory and concentration (known as fibro fog); headaches; and, most of all, fatigue. No matter how much you sleep, you always feel tired and, in some severe cases, you cannot even get out of bed when it flares up.
Studies suggest that nearly one in 20 people may be affected by fibromyalgia in varying degrees of severity. However, since both the aetiology and diagnosis of this condition are still unknown, the prevalence of this condition cannot be established with certainty.
Fibromyalgia is a contested medical condition surrounded by controversy. There is disagreement among the health profession about the possible causes and the diagnostic criteria of fibromyalgia, so do not be surprised if you are not believed by your own family doctor or by specialists. The life of persons with fibromyalgia is made even more difficult by being misunderstood by family, friends, employers and health professionals.
Studies suggest that nearly one in 20 people may be affected by fibromyalgia
If you speak out about your pain, people think you are exaggerating, making a mountain out of a molehill. If you look normal, you must be normal. People do not understand what they do not see. People believe you should see a psychologist or a psychiatrist because ‘it is all in the head’.
When doctors and researchers cannot find something organically or biologically wrong with the person suffering from the condition, they classify it in various categories and give it names like a somatoform disorder, psychosomatic disorder and functional disorder. Just remember that lupus, multiple sclerosis, AIDS and Lyme disease all fell in this category until some decades ago. WHO only recognised fibromyalgia as an illness in 1992.
Fibromyalgia can be a very disabling illness accompanied by body pain and linked to a poor quality of life. It is thought that this condition is related to abnormal levels of chemicals in the brain and changes in the way the nervous system processes pain messages. Some studies claim that fibromyalgia can be inherited, however, research has not been conclusive.
Being an ‘invisible’ disease, patients who suffer from fibromyalgia sometimes have difficulty accessing appropriate treatment or, indeed, be given the right diagnosis. As a result of the disagreement among professionals about the aetiology of fibromyalgia, patients sometimes are unsure whether the medical treatment which is prescribed to them can make them feel better. This makes many people with fibromyalgia feel they have no control over their condition.
However, there are things one can do. The first thing is to go to a rheumatologist who is in a better position to diagnose this condition than other health professionals. He or she will probably prescribe drugs like pregabalin. Just this month, the minister for health has announced that these drugs, which are quite expensive, are now on the list of medications which you can get for free if you have a referral.
Physical exercise like walking helps even though it may be painful. Psychotherapy is also helpful. Recent studies suggest that a multimodal approach to treating fibromyalgia is more effective than just medicine alone. The first two steps those suffering from fibromyalgia or related conditions should take are: talk to a rheumatologist and join the ME/CFS & Fibromyalgia Association.
If you have been diagnosed with fibromyalgia and would like to help with research on the subject, please fill in the anonymous questionnaire through this link.
Mary Anne Lauri is a professor in social psychology. Christina Lauri is conducting research on fibromyalgia as part of her MSc in health psychology at the University of West London.