The question “who am I?” can be difficult to answer, especially if you are living with an illness. It can be easy to fall into the trap of basing your identity on other people’s opinions of you, whether it is how many likes your post gets, how much someone wants to date you or how respected you are in your group of friends. This can lead to you never finding your true identity because it is constantly changing depending on the opinions of others.
ME is a complex and disabling condition that can cause significant loss of physical and cognitive function. It is a relapsing-remitting disease with the hallmark symptom of post-exertional malaise, which means that any exertion can trigger a worsening of symptoms. Research suggests that it is a neuroimmune disorder causing alterations in hormones, gut bacteria and impaired energy production. However, there are currently no biomarkers available and diagnosis is based on clinical history and exclusion of other conditions that may be present.
The ME/CFS Foundation recommends that anyone who believes they have ME seeks medical advice and diagnosis from a health professional. This should be done by someone who has been trained to assess ME/CFS, or a healthcare professional who has access to ME specialists who can offer an holistic assessment of ME/CFS (for example rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology and psychiatry). It is important that you get a correct diagnosis as this will help with planning and coordinating your care. Until a cure is found, treatment options focus on managing symptoms and include ‘pacing’ – matching activity levels to one’s limited energy reserves; sleep aids; medications to reduce pain; and cognitive behaviour therapy (CBT) for reframing inaccurate beliefs and altering activity avoidance. Some patients find that a combination of treatments works best for them.