Living with Fibromyalgia: Exploring female patients’ experience

Fibromyalgia (FM) is a chronic musculoskeletal pain disorder with various symptoms including

extensive pain, muscle and joint tenderness, chronic fatigue, disrupted sleeping patterns and depressive symptoms.

Other manifestations include cognitive, attention and memory difficulties, anxiety and numerous somatic complaints (Centres for Disease Control and Prevention, 2015). As stated by the National Fibromyalgia Association, an approximate 3% to 6% of the world’s population, or more than 200 to 400 million people worldwide, are diagnosed with Fibromyalgia, with the majority being females (National Fibromyalgia Association, 2016). In addition, Fibromyalgia is known to be one of the leading and most challenging chronic pain illnesses to diagnose and treat, without a known cure (Bellato et al., 2012; Institute of Medicine, 2012). FM was publicly recognised as an illness by the World Health Organisation (WHO) in 1992 (Galvez-Sanchez et al., 2019).

A study done recently in Malta, presented the lived experiences of females diagnosed with FM in the local Maltese context. My aims of this study were to capture the essence of the meaning these females give to their journey with FM, to explore what are the coping resources these females resort to in order to manage their condition and what is their experience with healthcare system in the local setting.

The study captured that initial journey with FM was quite a turbulent, challenging one. This is

because neither the patients nor the medical professionals could make sense and comprehend their

symptoms.

Feelings of shame, humiliation and belittling were also some of the feelings experienced by participants when they were dismissed and doubted by their own physicians. Getting a misdiagnosis for a psychiatric disorder like major depression or another physical condition was a repeated and shared experience by participants.

Practical changes around their employment, family and social life had to be made in order for them to be better able to cope on a daily basis. The interviews presented the strong sense of determination these females have in findings new, creative ways of living their lives with FM as symptoms flared up.

The study also presented what were the strategies these women resorted to in order for

them to shift and find new, healthier meaning to their condition.

The social aspect of support was also actively mentioned by participants in order to cope with the condition.

Having family providing them with practical and emotional support, helpful employers and colleagues that recognise their condition as well as attending support groups and being in a community with other patients with FM, were some of the external supportive practices mentioned that helped them throughout.

The study also highlighted how these females with FM interacted with the local healthcare

system. The participants shared a common experience where they felt like they had to be their own

doctor and try and make sense of the symptoms themselves. A number of lacunae in the local healthcare system were also addressed since they felt like there was no communication and collaboration between different healthcare settings. Furthermore, the participants felt further helpless and frustrated when they noticed they had not been given a follow up appointment to another healthcare setting by their previous physician. In this manner, participants constantly had to fight their way in order to be seen, acknowledged and taken care of by their healthcare providers. Finally, the issue of whether FM should be considered as a disability or not was another finding that was greatly highlighted. Whilst some of the participants felt it was necessary to being enlisted as disabled, others did not share the same beliefs.

What now ?

With FM being considered and recognised as an illness quite recently by the World Health

Organisation (Galvez-Sánchez et al., 2019), I believe that research and knowledge are still in their

infancy. Therefore, as participants wish and hope for, more investment and effort in research, specialised training and education should be made in the local context in order for such women to start being heard, seen and validated. Having said that, being a qualitative study, the findings of this research study are not representative of the general population diagnosed with FM and other invisible illnesses. That in itself is another reason for further research and investment in such field.

This blog post was written by Janice Aquilina who graduated from the University of Malta with a Masters Degree in Health Psychology. Currently working as a Health Psychology Practitioner within the Child and Young People Mental Health Services. Leading roles include individual therapy with young people as well as psychoeducation sessions for parents, group therapies- Dialectic Behaviour Therapy and Anger Management, as well as conducting cognitive assessments. Life away from professional responsibilities include indulging in outdoor activities- from hiking and kayaking, all the way to camping. The pleasure of experiencing new lands and cultures is of

essence, and any request for a trip abroad is certainly never rejected!