Fibromyalgia: The unknown illness

Fibromyalgia is related massively to Lady Gaga as she publicly announced her struggle with this illness. She cancelled her European tour and a number of public appearances due to being hospitalised and having sever pains, and finally the news looked towards this devastating hidden illness. However, even as you search google for her relationship with this illness it doesn’t drop down in the search bar.  
 

​Outside of the celebrity eye there are many people who struggle with fibromyalgia (commonly referred to as fibro) and it is something that can be formed through life to the point in which it is a struggle to move from your own bed without the aid of a cocktail of drugs. Many of the sufferers even struggle with something commonly known in the fibro-community as ‘fibro-fog’. ‘Fibro-fog’ creates problems with mental processes as well as memory and concentration. Doctors are yet to find an exact cause of fibromyalgia and even the process of diagnosis can take years. With the NHS suggesting that ‘some people are more likely to develop fibromyalgia because of genes inherited by their parents’ there is a struggle to be hopeful that the medical professionals may be able to find a cure for the next generation of victims.  
 
Colette Babe is one of the many fibro sufferers and I have watched as her life and my own families unravelled due to this illness. She mentions that ‘It’s like your life has ended and a new fibro life exists in its place.’  
 
I walk in to Colette’s very own prison cell … her bedroom, It seems like a regular bedroom and quite large but I can see how the walls would soon start closing in around anyone spending more than a lazy Sunday in there. For many individuals being able to stay in bed all day long would be a godsent activity however, for the three to six percent of the world’s population struggling with fibromyalgia, who can’t afford the expensive medical treatments, this is their everyday confinement. Colette’s body language and facial expressions completely change from the over the top mum I knew, instead representing a struggling patient as she began explaining “I was diagnosed with Fibro following two years of continuous exhaustion and pain.” She ‘had to give up a career that I [she] thoroughly loved, this was the most difficult thing to come to terms with; the fact that I[she] would never step into a classroom again.’ While talking about this change in her everyday life, Colette became emotional, tears coming to her eyes. Quickly grabbing some tissues I questioned if she was ok to continue. She said yes and continued to speak of her personal struggle with the ever growing symptoms. “The symptoms started with chronic fatigue but being a teacher, you battle through. One day I was walking along a corridor in school and I literally could not take another step and had to be helped by another teacher to the staff toilets. From there three teachers had to help me to a car, while one drove me home as I couldn’t drive. This was where everything started to get worse, which I didn’t even think to be possible”. 

​One of the effects that people don’t consider in association with physical illnesses is the effect on that person’s mental health and ability to function mentally every day, from their own house to the work place. Colette’s fibromyalgia was no different to this as she went on to explain that though the NHS is an organisation which is valued today she began to get angry at them as she was being told ‘it’s in your head’ this was the answer consistently received that she started to believe it. Medical professionals clearly struggle to pin point ‘the multi-faceted illness’ and she explains that this is due to the ‘symptoms being so varied and differing massively from sufferer to sufferer.’ As our conversation deepened talking through her family and friends and the loneliness, she felt due to the lack of understanding coming from her close peers we turned to her life line – Facebook. It became clear when we were discussing support mechanisms that Facebook and the group of social friends, she found on this social media site became a major fall back, giving her the closeness, she was missing. “I lost most of my friends who became disenfranchised with me saying ‘im just not well enough’ or making plans and then getting to the day and saying, ‘I’m sorry my body just doesn’t want to play today’. This impacted my mental health massively. Finding the small group on Facebook helped me into forgiving myself for having fibro and helped me to feel less guilty about the illness.” While speaking about this there was another shift in her facial expressions as she began to look sad and almost questioning whether to continue down the path she was clearly about to take. Then with a look of courage she continued down this path. She started “Unfortunately, one of my friends couldn’t cope anymore and took her own life at the beginning of the year. It really rocked us all to the core, making us realise how much we depended on each other for support rather than our own families.”  

​This information shocked me as most people don’t see the mental effect of a chronic illness. The support Colette has received from this group has obviously been the best thing to occur over the last two years of her life. Although, the lack of research being done into Fibromyalgia is shocking, medical professionals are still stuck as to which medication to give to a certain person and are continuously getting this specific diagnosis wrong. There is a need for a sense of urgency to investigate this illness as many people, such as myself, will probably develop it due to their genetics. The life that Colette is living is only now starting to balance itself out with her getting a new job, however, Fibro has taken over even this as she can no longer teach and will never step into a classroom again. She ends our interview with a thought about everyone dealing with a chronic illness, invisible or not, “the real struggle is pretending everything is ok because being ‘sick again’ is devastating and not something we asked for.”