This is my rant - after LindaC's post, which has generated a lot of empathetic anger regarding our shoddy treatment. Not sure where we go from here....
Having a severely debilitating illness is not a lifestyle choice. If it were, the amount of shoulder-shrugging ‘experts’, the frowns, the head-shaking, the denials and just plain rudeness we have to face in order to try and get some help would suggest this is some form of self-harm. Is it right that people who are trying everything and anything they can to restore their health, no matter how extreme and mostly self-funded, should get such poor treatment?
It must be so tedious for health professionals to have to see people who have constant fatigue, bowel issues, joint pain, sleepness nights, muscle weakness, flaking itchy skin, dysfunctional metabolisms, brain-fog, loss of previous meaningful employment, active lifestyle, relationships, self-esteem and much more. Imagine how that might feel for us?!
Validation of our conditions would be a welcome start. I cannot imagine an apology for all the mistreatment endured will ever happen. Some of us would like to rally, stage a protest; many things to rage at the injustice. But guess what? We're too bloody ill. The fight has almost been knocked out of us. Almost.
To all the heroic people with no energy and no medical support, left alone to manage your symptoms, I empathise and I applaud your tenacity and hope one day we will be free of the permanent dust in our nostrils from being swept under the carpet.