How you describe yourself in a few words is a crucial part of your personal brand, and it can make or break an impression on others. Whether you’re trying to get a job or attract clients, your descriptions should be well-considered and capture your positive characteristics.
If you’re living with ME, it can be even more difficult to create a strong and positive identity for yourself. The illness can cause a wide range of symptoms that affect how you feel, think and act. It can also interfere with your relationships and work performance.
People with ME often describe themselves as tired, unmotivated and unable to focus. They often have trouble explaining what they’re going through and are misunderstood by family, friends and co-workers. Some people with ME have difficulty finding and keeping a job. They may find themselves frequently missing work and struggling to pay their bills. Others need to give up their jobs due to the illness.
Unlike other illnesses, ME cannot be easily diagnosed. It is often misdiagnosed, and many people struggle for years before receiving a correct diagnosis. Many have to go to multiple doctors, and many have been told they’re crazy or made the condition up themselves.
The illness may present itself suddenly, most often after an infection or surgery; after a major hormonal shift (such as pregnancy or menopause); or from stress or depression. Symptoms include fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive problems and orthostatic intolerance. Children and teenagers may experience pain, periods of bloating or constipation, difficulties with balance and a fluctuating energy level.
Research is ongoing to try and understand what causes ME and how it can be treated. The largest ME research project, DecodeME, has already found genetic markers that can predict the onset of the illness and help scientists look for potential treatments.
Some people with ME have to stay at home and are unable to work, but it is important for them to be able to access treatment and support services so they can continue to live their lives. They should be able to visit their local ME/CFS specialist for help with pacing their activities, sleeping aids and medications, and support to obtain disability benefits or assistive devices.
The NHS should provide local ME services and establish regional specialist centres for patients who are very ill, according to the campaign group #ThereForME. The campaign was launched after an inquest into the death of Maeve Boothby O’Neill, 27, who died from myalgic encephalomyelitis (ME) at her home in Exeter in October 2021. She had been suffering from severe ME for years and her death was a wake-up call about the need for change in how the illness is assessed and cared for. Campaigners want to see a transformation in NHS care for ME and other chronic illnesses such as long Covid. One NHS doctor who regularly treats ME patients told the inquest there needs to be a local service for new cases and better support for those with severe ME.