"I’m not being heard”
Robert* experienced migraine symptoms since around 2002, but was only diagnosed with chronic migraine in September 2009.
He described having some symptoms almost perpetually, but adds that the nature of the symptoms changed. Over time he has developed a strategy for managing life with migraine, concentrating on avoiding the triggers: “If I can remain… in a darkened room… in the house without going out… if I can get by without having my sleep disturbed or without any stress – I can manage it.” But the reality of daily life makes this preventative strategy hard to maintain.
Robert recounted how living with migraine makes it difficult to do certain types of work, but that work is possible with certain small adjustments: “If I am working at a work station I have to have something in place where I can take longer breaks. If I am poorly, I need to have time to recover. If there is glaring light I need to be able to shield myself from it somehow… such as wearing a cap or glasses”. However, in his experience, the difficulties of working with migraine have been compounded by employers’ failure to make reasonable adjustments: “Employers’ responses have been quite poor, I’m afraid. I’m really struggling to get employers to understand I need to have adjustments in place. They start to hassle me. Eventually it turns into something adversarial and confrontational and I have to take it through the tribunal process.
Regarding his experience of primary care services, Robert recalled, “I’ve had a considerable amount of problems with GPs... but I’ve now got a GP who I think I can work with… he is listening, rather than coming to conclusions. I went to a GP-led clinic and I’ll go back there at some point because my local unit is offering me something that is not compatible with my lifestyle. I wasn't being heard so I needed to go somewhere else where I was.”
*This case study is anonymous and the name and photo given is not representative of the individual who provided their story.