Living with Fibromyalgia – A Womans Perspective

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Fibromyalgia has a profound impact on the lives of those who suffer from it. Most researchers agree that a better understanding of the condition – and how it affects the lives of sufferers – is essential to pave the way for better management and prevention strategies. A recent influx of research has focused on the qualitative aspects of Fibromyalgia – in particular individual experiences with the disease. A recent study by Wuytack & Miller (2011) sought to extend this body of research by delving into the social, personal, and occupational impact that Fibromyalgia has on the lives of patients, as well as their personal outlook on the future and ability to communicate thoughts and feelings regarding their disease. Wuytack & Miller used a type of research known as “phenomenological” to study female patients with Fibromyalgia. Phenomenological research attempts to garner detailed information and individual perceptions through methods such as detailed interviews, discussions, and participant observation. In particular it emphasizes the importance of an individual’s personal perspective and own interpretation of the subject matter being studied.

For the purposes of this study, six female patients with Fibromyalgia completed semi-structured in-person interviews, as well as an information sheet to gather demographic information. The interviews consisted of nine questions, equally divided among the following three categories: 1) impact on personal, social and occupational life; 2) patients’ views, attitudes and behaviors with regards to their future; and 3) how do patients with Fibromyalgia feel about expressing what they experience? Also – how do they feel they are perceived by others? Patients were encouraged to elaborate as needed and to answer freely. The interviews were all recorded and then transcribed for analysis. The participants’ answers were grouped according to four main themes in order to organize the data: 1) occupational impact; 2) impact on personal life; 3) views about the future; and 4) interaction, communication, and expression.

Occupational Impact

The researchers found that all six of the women reported difficulty coping at work since the initial onset of their symptoms. The women cited physical inability, exhaustion, cognitive disturbances, high stress levels, and unsupportive work environments all as obstacles to continued working. All but one of the women were no longer working at the time of their interviews. The following are samples of quotes regarding occupation as expressed by the women during the interviews:

  • “There was the factor of stress as well…ever increasing demands, I was really overworked and my employer didn’t really show much empathy.” (p. 3)
  • “I once had to see a doctor for health insurance…he said “so, when are you going back to work?”…I answered “tomorrow if I could!”…I started crying because of the disappointment! I would have loved to be able to return to work!” (p. 4)

Impact on Personal Life

The six women in this study reported that they were required to forego many hobbies due to their symptoms and adopt new ones in exchange. Stiffness and pain were reported to interfere with physical activities and activities requiring fine motor skills (such as knitting). Fatigue was cited as an impediment to travel and physical activity, and cognitive impairment precluded leisure reading. All patients emphasized the importance of family support. While some voiced that their husbands played the greatest role in assisting with their disease, others cited Fibromyalgia as the determining factor in the demise of their relationships, citing a lack of understanding from their partner. Similarly, all women had children and reported that they were an integral part of their support system; however, those with young children remarked that the constant care they required was difficult to manage. Additionally, the women voiced feelings of guilt that they were unable to keep up household responsibilities and devote more attention to their children.

  • “I love reading! I always hoped there would be a time when I could read more books, but with the concentration disturbances I can’t. Leafing through magazines is all I can manage.” (p. 4)
  • “My husband at the time my symptoms started showed really no understanding whatsoever…we divorced…The greatest change for me now is a very loving partner. He deals with my Fibromyalgia so well…Yes, that is my best gift.” (p. 5)
  • “My youngest son was a teenager at the time my symptoms started and he had troubles of his own…that made it harder on him I think, because I couldn’t always be there for him.” (p. 5)

Views About the Future

In this study, the researchers found that many of the women endured a long period of waiting between the onset of their symptoms and receiving the diagnosis of Fibromyalgia (one woman waiting 19 years). They found that this resulted in uncertainty and prolonged worrying about both the nature of their symptoms as well as their overall future. Most patients desired to receive a “label” for their condition in order to facilitate understanding of their symptoms and gain social acceptance. In addition, the women indicated that receiving an actual diagnosis provided relief and reassurance. However, while some women were able to move on and adjust their life outlook to adapt to their newfound diagnosis, others (particularly the younger women) were still not “at peace” with their diagnosis and the ramifications it held for their future. Personal strength and perseverance were considered necessary in order to obtain a more complacent future outlook.

  • “It takes ages before they tell you what you have! You have been through a lot of tortures, all tortures! It really is a grisly time!” (p. 6)
  • “I was happy when I got the diagnosis; finally the child was given a name.” (p. 6)
  • “I now see my future as very uncertain actually…you really don’t’ know how it is going to evolve.” (p. 6)
  • “You have to resign yourself to it to learn and live with it.” (p. 6)

Interaction, Expression, and Communication

The emotional aspect of Fibromyalgia was greatly mediated by the women’s ability to interact with others. The increased social isolation resulted in sadness and loneliness, however some women also noted that the loss of friends resulted more from a lack of understanding and acceptance on the part of the acquaintance. The women did indicate finding comfort and acceptance by participating in self-help groups with other Fibromyalgia sufferers. In terms of communication, the majority of the women interviewed did not enjoy talking about their condition to others without the disease, due to the difficulty in describing their physical symptoms, incomprehension on the part of the other person, and out of a desire to avoid unwanted reactions. With regard to healthcare providers, all of the women reported having had experiences with disbelief, denial, and lack of commitment and interest. The researchers found that respect, belief, guidance, commitment, and realistic opinions were the attributes of healthcare providers that were valued most greatly by the six women interviewed.

  • “When I was sitting at home alone all the time, it was as if the walls were coming at me…I felt depressed.” (p. 6)
  • “That is the nice thing about meeting in a self-help group, you don’t have to explain and justify yourself all the time.” (p. 6)
  •  “They don’t feel what you feel and it is so hard to tell them what you feel…If you break your arm you can see it, but not in the case of Fibromyalgia.” (p. 7)

Other Scientific Research

 Two other recent studies have looked at Fibromyalgia through the eyes of sufferers using a phenomenological approach. A 2009 study by Lempp et al. evaluated 12 Fibromyalgia patients (11 female, one male) and found a number of similarities to the results of the Wuytack & Miller study. They found that the patients’ health identities slowly transformed following their diagnosis of Fibromyalgia, and that the presence of Fibromyalgia had a profound impact on the patients’ physical, social and mental lives. The word “pain” was the most frequently used word throughout the interviews, and all participants complained about a lack of restorative sleep and resulting chronic fatigue. Patients reported feelings of depression, suicide, and cognitive difficulties, as well as increasing isolation due to their physical limitations. Many of the subjects also reported feeling misunderstood or discriminated against because of their Fibromyalgia.

Another study evaluated four female Fibromyalgia patients and their spouses in an effort to determine the life experiences of both individuals in the context of Fibromyalgia. For the patients, the researchers found that individual loss of identity was a key theme among all of the women. It was brought on by the buildup of symptoms and compounded by the lack of understanding, belief, and negative attitudes from those with whom the patients interacted (friends, family, caregivers, etc.). Much like those patients evaluated in the Wuytack & Miller article, the women in this study also reported having to modify their daily activities and roles, as well as curtail their social life, all as a result of overwhelming pain and exhaustion (Rodham et al., 2010).

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 References

1.        Wuytack F, Miller P. The lived experience of Fibromyalgia in female patients, a phenomenological study. Chiropr Man Therap. 2011;19:22.

2.        Rodham K, Rance N, Blake D. A qualitative exploration of carers’ and ‘patients’ experiences of Fibromyalgia: one illness, different perspectives. Musculoskeletal Care. 2010;8(2):68-77.

Lempp HK, Hatch SL, Carville SF, Choy EH. Patients’ experiences of living with and receiving treatment for Fibromyalgia syndrome: a qualitative study. BMC Musculoskelet Dis. 2009;10:124.

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