According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis.
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)
Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a chronic, complicated disorder whose primary feature is extreme, seemingly unexplainable fatigue. The illness may also be commonly abbreviated as ME/CFS. The characterizing fatigue can worsen after physical and mental activity, but does not improve with rest. This fatigue seriously hinders the person’s ability to do normal tasks that were not a problem before getting sick. It can lead to serious lifestyle restrictions and make it difficult for patients to maintain a job.
ME/CFS can affect people of all ages and sexes, but it is most common in people between 30 and 50, and affects females more often than males. It is believed that ME/CFS is very underdiagnosed due to lack of education about the illness as well as limited access to healthcare.
The severity of symptoms can fluctuate with time, some symptoms will come and go, and not every individual will have all the symptoms listed below. They include:
- Intense fatigue that isn’t helped by rest
- Inability to do simple activities (taking a shower, cooking, doing laundry) that were once doable, because of the fatigue
- Worsening of symptoms after an activity that wouldn’t have been a problem before getting sick
- Very low stamina
- Being confined to bed
- Problems with thinking and concentrating that might feel like a “brain fog”
- Blurred vision
- Sleep problems
- Worsened symptoms when standing or sitting up
- Pain in muscles and/or joints
- Sore throat
- Swollen lymph nodes in the neck and/or armpits
- Bowel dysfunction
ME/CFS treatment focuses on lessening whatever symptoms may appear. It includes:
- Avoiding overexertion
- Establishing good sleep habits
- Pain management
- Physical therapy focusing on forming a plan of what exercises are best for the patient
- Cognitive therapy
- Low doses of antidepressants
- Changes in diet
Veronica Jones’ Story
In 1996, Veronica Jones came down with a flu-like virus. However, she did not give herself enough time to rest and recover while she was ill. Instead, she went on vacation and pushed herself to get back into the swing of things before she was feeling better. This decision rid her of any energy she had and thus led to her developing post virus fatigue, and ultimately ME.
At only 58-years-old, Jones found herself using a wheelchair to get around, and a few short years after that she was spending most of her time in bed. Now, she has been dealing with her diagnosis of ME for the past 26 years.
Jones says that even simple interactions, such as seeing her family that lives far away and whom she doesn’t see often, are exhausting and leave her confused. Despite her difficulties, she continues to find joy in the small things, such as being able to sit outside in her garden.
Since her diagnosis, Jones has been working towards ending the stigma of laziness that surround people diagnosed with ME/CFS. She herself has experienced this bias with her own doctors, some of whom recommended exercising as a way to relieve her symptoms. The message is that patients need to push themselves in order to get better, a mentality that simply does not work.
Jones’ case is very severe and has limited her experiences in life greatly. She longed to do so many things, including traveling, seeing relatives, and walking her dogs. She has felt there is a lack of support for people diagnosed with ME, and with the condition being so life-altering, she believes this needs to be rectified immediately. A diagnosis of ME should not come with stereotypes of laziness, and there needs to be more support systems in place for those who are suffering.