What I have found over the years, and through much reading and discussing with others, is that we just want to be understood by others. This is the one topic of CFS and FM that are brought up probably the most. When someone says they have cancer, Aids, or other diseases, are they told “you just need to push yourself” or “just act like you are not sick and you won’t be”. It is really a form of prejudice that we endure daily from others. We have had to deal with this prejudice in the workplace, doctors, family members we live with and otherwise, friends, and strangers. We suffer silently and fear talking about our illness to anyone because of the reaction we may get. “Oh, you’re always sick”, or “you make yourself sick”. The majority of us are not complainers, do not seek special attention, and do not thrive on being sick. We want to live our lives to the fullest and attempt daily to do the activities of “normal”, healthy people. But our bodies fight us every step of the way, or just do not allow it.
The majority of us are also positive, motivated, well educated individuals who have either had to give up our careers, reduce workloads, or just suffer silently and put in their day at work extremely miserable, but afraid to say so. By society, we are looked at as lazy and spoiled with no ambition. We are constantly subjected to the cruelty of others when we park in the handicap spaces at Wal-Mart or other stores because we may look healthy, or are thought to be too young to be parking there. We have spent years searching, begging and pleading for our physicians to take are symptoms seriously. Instead we have been pushed aside, ignored, or just lumped into a profile saying we just need anti-depressants and therapy.
People need to be educated and we have to fight for our right to be heard. The CFIDS Lobby Day on Capitol Hill is May 8th and 9th in Washington, D.C. Please see my post on this for more information. If you are able, please do your part.
Also, National CFIDS & Fibromyalgia Awareness Day is May 12th. Spread the word and use this day to provide as much information to those around you.