Reflection
Accept ILLNESS as part of life ?
Or fight illness in general ?
Who has more right to live, the virus or me?
Do we have to accept the the consequences of illness in general ?
Or is it about the consequences of miss information about our illness, which is affecting us and our children so much more ?
These are all different issues, and once to often get mixed in our emotional struggle to live with what we have to live with: a severe miss perceived and stigmatized disease.
It would be just like any other disease out there (accepted by sufferers - hard - but so be it ), if we and our children get the right to live a dignified sick life !
What we do not have to accept is that health institutions and governments around the globe failing to acknowledge the disease as a serious acquired neuro-immune disease, refusing to invest in research and the possibility of a cure.
The consequences are severe
Around the globe, millions of people (including children) live with severe pain, muscle weakness, bone-crushing physical exhaustion, post-exercise malaise, sleep disturbances, cognitive dysfunction, mental fatigue, severe headaches, just to name a few of the symptoms. Many are home or bedbound for years.
Many patients develop life-threatening complications after being sick for decades and 6% develop Mantel Cell Leukemia. Sufferers have life expectancies thirty years lower than average.
Many patients live in poverty, because they can no longer work; they lose their careers, their businesses, their savings, and their homes. Most are denied disability benefits, by governments that have falsely claimed that ME/CFS is a “psychosomatic disorder”.
Doctors are not trained, or are misinformed about the seriousness of this acquired neuro-immune disease and refuse to investigate their symptoms, or even provide basic, supportive medical care. In some countries, ME/CFS patients are “sectioned” to psychiatric institutions, and are denied the appropriate medical treatment they so desperately need.
Children suffering from ME/CFS lose years of education and normal social interaction with peers. Some school systems refuse to accept or accommodate a sick child’s medical limitations, worsening the child’s condition.
Child welfare officers sometimes remove children who are sick with ME/CFS from loving
and caring homes. Parents are unjustly accused of child abuse, and children are institutionalized or put in foster homes.
As a result of the flawed case definition as well as an inappropriate, trivializing name, patients face discrimination in health care, and alienation and isolation from family, friends and society.
Due to this magnitude of difficulties, suicide rates in ME/CFS patients are very high.
So do not forget, living with a disease is one thing, fighting social injustice is another !