In order to illustrate the psychological impact ME/CFS can have a case study is provided. Michelle is a 30-year-old woman who has suffered from ME/CFS since she was 22. Prior to her being diagnosed as suffering from ME/CFS she had always been a healthy person, enjoying an active social life building a successful career for herself. As with most ME/CFS sufferers in the early stages of her illness Michelle had no idea that this was what she was suffering from.According to medical diagnosis that she has received since the catalyst for her illness was a viral infection in the throat and it is thought by her specialist at the Royal Preston Hospital that she worsened the ME/CFS symptoms by not taking time off work to recover from this virus, she carried on working relying on antibiotics and painkillers. It was several months later and she was still feeling ill. Classic ME/CFS symptoms, as outlined in Fukuda (Fig 1), such as ongoing exhaustion, memory impairment, muscle weakness were beginning to manifest themselves.
Michelle was starting to take more and more time off work due to sickness, which she found frustrating and on reflection each time she was off sick she probably returned to work too soon. A diagnosis of ME/CFS was not made for several months despite the fact that Michelle had seen several doctors. For this case study we have chosen to highlight the psychological impact ME/CFS has had on three very important areas of Michelle’s life.
Impact on personal relationships. Before Michelle became ill she had an active social life with a wide circle of friends. She enjoyed all activities that would normally be associated with a single person in their early twenties, this included holidaying, eating out, visiting pubs, clubs and going to the theatre.
It became apparent to Michelle that as the illness worsened her circle of friends got smaller. “There seemed to be no reason for this, I was still the same person despite the fact that I was starting to feeling so tired that I always had to be the first to leave parties or to cancel social engagements; it seemed difficult for friends to understand that because I was now unable to socialise I still cared about them and still regarded there friendship highly.It was still the case though that the more often I cancelled engagements or left social situations early the less chance I had of being invited out again.
This led to me feeling very alone with my disease and the support that I needed from my friends didn’t seem to be forthcoming. On reflection I think some of this problem could be due to the fact that this was 1993 and ME/CFS awareness was generally not very high, therefore, it was difficult for others to understand why I could do something one day and look “well” but disappear from the social scene for weeks at a time.” Added to the fact that Michelle found relationships with a circle of friends more difficult one to one relationships with individuals was also a problem. “I found dealing with people on a social level increasingly difficult, for example just holding a conversation with somebody became stressful. This was because the mental fogginess and poor short term memory associated with ME/CFS meant that I could forget what I was talking about mid sentence, I would forget peoples names and I found the whole experience embarrassing. Also the stress from this led to my experiencing headaches that were so severe I can’t describe but I had never suffered from them before.
At this time the fatigue I was suffering due to ME/CFS was made worse, I feel, by the fact that I was trying to continue with this “normal” social life. This led to a downward spiral in my feelings not only towards my friends but also to myself. I felt I had nothing to offer people on a social level and felt other people found me extremely boring.”Employment status and self-worth. Prior to Michelle becoming ill she had qualified as a Medical Secretary and had proven herself to be so efficient at her job that she was considering furthering her career by increasing her qualifications in order to apply for what would be seen as a promotion by taking a post as a Practice Manager.
“I really enjoyed my job. I was good at working as part of a team and was considered by my colleagues as a reliable team member. Also there was a financial factor, the job I had was well paid and had I have continued my career I would almost certainly now be earning something around 20k.
When I first became ill, like most people, I though I would be letting down my colleagues by taking lots of time off sick so I didn’t. I had no idea I could be contributing to the worsening of my condition. As the ME/CFS got worse I went from having a full time job to working only four days then three then two, until finally my doctor signed me off work for initially three months. After I had been off for about three months my employers, who ironically were doctors themselves, called me into work to tell me that if I didn’t resume my fulltime post within the next few weeks they would have to terminate my contract.
I was devastated as I felt guilty that I was letting them down so after speaking to my Consultant who said there was no way I would return to work within their timescale I left my job. I can’t begin to describe the feelings of worthlessness I had then and still continue to this day because I cannot work. I feel like I have no useful place in society.” All humans have needs, A .H. Maslow, when discussing certain basic human needs arranged them in an order which he described as his ‘Hierarchy of Basic Needs.
‘In order for a human to self-actualise that person needs experience feelings of physical and psychological safety, love, belonging and affection and to generate a level of self esteem based on their competence within given situations. It is quite clear from Michelles’ experience that her ability to self-actualise was seriously affected by a major plummeting of her levels of self -esteem. This lack of self-esteem can be directly linked to ME/CFS.
Experiences like Michelle’s are common amongst ME/CFS sufferers and can be read in other case histories.Failure of treatments. Another psychological set back that sufferers of any disease can experience is the failure of certain treatments to bring about a cure. This is especially common for sufferers of ME/CFS due to the fact that the disease does not follow a set pattern and the symptoms, and the degree of disability from the symptoms varies from patient to patient.
Many of the treatments for ME/CFS are not available on the NHS and therefore can be costly.The cost is compounded when a person, due to their illness, has been made unemployed. Like many other ME/CFS sufferers Michelle tried a variety of treatments often at a considerable cost, unfortunately though she was unable to find any kind of satisfactory treatment. “One of the worst things about having ME/CFS is the fact that there is no one tried and trusted treatment available. What there is an availability of however, is so-called wonder treatments that all allegedly work.One of these is a food supplement called Enada.
I heard so much hype about this that I felt I needed to try it. This treatment was pioneered in America and when it was first available in the UK it was both very difficult to obtain and also very expensive. In order for me to use Enada I bought it mail order over the Internet at a cost of 30 for a months supply.
As I was unemployed 30 seemed to be a large amount of money but I was prepared to spend it if it would give me any sort of relief from the ME/CFS. When I received my consignment of Enada I was really excited, there had been so much written and talked about this that I really thought that even if it didn’t cure me completely it would at least give me some sort of normality in my life. After three months treatment using Enada at a cost of 90 I felt absolutely no different.
This made me even more depressed, I went into the treatment with high hopes expecting some sort of relief and knowing that the treatment had failed was the biggest blow I could have had at that time.” In modern society there is an expectation that when a person becomes ill he or she can rely on medicine and science to hopefully find a cure. This is the case with many conditions, with ME/CFS however; it is not the case.Sufferers like Michelle, are often finding themselves frustrated by drugs and other treatments that offer a cure but in reality do very little to relieve their symptoms. Again this is an area that has a major impact on the psychology of patients and does make symptoms such as depression and feelings of isolation even worse. The case of Michelle is typical of ME/CFS sufferers generally. This is an illness that can effect anybody regardless of their age, gender, social background or status. All sufferers of ME/CFS have the quality of their lives reduced greatly and are forced to adjust not just physically but also psychologically to their illness.
Summary. Awareness of the ME/CFS and the problems associated with it is an issue that needs to be addressed not only medically but also socially. The purpose of this piece of writing is to introduce the reader to some of these issues and by raising awareness of the condition it will also raise understanding of the plight of the sufferer. Having examined exactly what constitutes the chronic fatigue known as ME/CFS it was then important to explain how the medical profession arrived at a name for the condition and look at some of the very contemporary debates surrounding the suitability of the names it has been given.Diagnosis is of particular importance in raising awareness of ME/CFS. This is an illness with many complexities, and diagnosis can often take time, as doctors must first be in a position to rule out other illnesses that have fatigue as a major symptom.
This will have a deep psychological impact on the patient. Finally in order to illustrate the impact that ME/CFS has on the life of a young adult there is the case study of Michelle who was diagnosed as having ME/CFS at the age of 22 and found that this led to massive changes within her own life both socially and professionally. The international profile of ME/CFS awareness is raised annually when on May12th each year it is International ME Awareness Day, this is marked by the wearing of a blue ribbon. Hopefully ribbons will be available for purchase in more and more outlets each year