For my 7th and final post talking about my experience living with ME/CFS I want to try to give a voice to the millions of patients who rarely have one.
As this series has illustrated, the lives of people living with chronic illness are often very different than they appear. People rarely advertise that they are suffering so if somebody isn’t missing a limb or covered with giant blisters it’s not generally apparent that they are sick. I’m not as bothered by this as much as some people with chronic illness because I don’t see how people seeing me actually helps anything, but where this lack of visibility becomes a problem is when it effects peoples experiences with healthcare providers, social services, or policy decisions surrounding research funding.
A lack of awareness of the recent science still leads too many doctors to fail to fully grasp the severity and physiology of the disease. As frustrating as this is for people with ME/CFS, it’s even worse for people with other adult onset genetic metabolic diseases which can present with similar symptoms, and often have treatments, but are rarely diagnosed in the treatable stages due to being mistaken for psychiatric or psychosomatic illness. This needs to change. GPs need to be trained to differentiate metabolic diseases.
Everyone’s circumstances are different but the way that I have managed to cope with having ME/CFS is just by reading all the science myself and then developing my own treatments to address the various physiological issues. With the underlying cause of the energy pathway disruptions still a mystery this is only partially effective, but it has allowed me to keep my business (and myself) alive, so far.
As I settle in this morning and wait for the storm that’s about to hit me from briefly testing a new kayak yesterday, my thoughts move towards all the people with this disease who can’t work at all, some of whom are bedbound. I can’t imagine the strength that takes to live like that. Whatever your level of disability, I hope this series has helped you feel a bit less alone. Hang in there. The newer science is encouraging.
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See the original post and discussion here.
