I have a real problem with the name given to “Chronic Fatigue Syndrome”. It makes our illness sound as though it is just fatigue when there is so much more involved. When I have told different people that I have an illness known as Chronic Fatigue, I get this response: “Oh, so you’re tired all the time.” It is so much more than that.
The CFIDS Organization is currently working on getting the name changed. I have started referring to “Chronic Fatigue Syndrome” as CFIDS – Chronic Fatigue Immune Dysfunction Syndrome, which explains the illness in more detail.
If fatigue were the only symptom – although that is bad enough in itself. It cannot even really be described as “fatigue” – it is so much worse than that. It is as if every ounce of energy and strength has been totally depleted from a person. Taking a shower, making the bed, brushing one’s teeth is too strenuous.
With CFIDS, it is as though a person’s whole identity is stripped away and the suffering individual becomes only a shell of his/her former self. Every moment in the sufferer’s life becomes a hurdle and the struggle is made even more difficult because others can’t understand what is happening to the person they once knew.
Sufferers find they can no longer balance their own checkbooks because their brains cannot comprehend the math – even when using a calculator.
Sufferers find they are not safe to drive because they will get lost in areas that they have driven in most of their lives.
Sufferers find they can no longer take care of themselves, let alone their children, spouses, and homes.
Sufferers find their lives that were once full and rich socially have now lost all of their friends because they don’t get what is happening.
Sufferers lose self-esteem as they lose the ability to hold down jobs, provide income for their families.
Sufferers feel hopeless and alone most of the time with little support from others.
This is why I have made it my goal to get the word out and to help people understand.