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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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 !
I just feel very much, that we have swallowed the "there is no cure for CFS" line much to much. How could there be, with the little money that has been spent? Spend the same for ME/CFS as there is for other illnesses and then see where we can get. We have not even started yet.
Take care
I agree with the spirit of this post, but as far as "I can write, organize, relfect, meditate, dream, plan, love, communicate and live." goes, the fact is that our quality of such is limited. From personal relationships (due to lack of energy), to our ability to write for more than a few minutes, the fact that our plans (even if we lose our former ambitions) are difficult to carry out etc.
It is wise to not be all-consuming in a desire to seek a cure that does not exist, but we still need to do something so that a reasonable treatment might exist in the future.
I can already hear the bulldozermir si ues ja einig, hoere me uf stuerme
Just building the train has been tried for twenty years; that's a very long time to fight and hope for cure ! I do not even see the train tracks in all the forest of misinformation and vested interests !
Maybe we do have to build the bulldozer first
My ME symptoms have been so severe that the even reading this post would have been impossible, let alone responding. Acceptance is definitely something I aim for. Its a fundamental aspect of my philosophy of living.
This is not to say I find it easy. I don't. Because acceptance is an action (the reverse of resignation) I need a certain level of wellness to be able to do it. Hopefully I am going into one of those spaces where I can write a little and plan a wee bit. For 5 years I have not been able to much of either.
FOr years before that I tried to live as though I was healthier than what I was. SO acceptance of the illness and the situation with regards to the mistreatment I have received as a result of the illness, may paradoxically I may actually improve as the quality of life as (as suggested). That may not make sense but I do not think acceptance means that we do not work for change in ourselves, in advocacy, in our envirnoments. Its part of the phiosophy of mindfulness.
When I am very ill there seems to be an uncontrollable rage which I also have to accept - sort of accepting non acceptance.
So I sort of agree with all the coments (if that makes sense).