Question:
I have been writing since I was diagnosed last week with CFIDS. I have all the symptoms, and everything else seems to be ruled out. The problem is, no one in my family will believe or support me. They keep asking for "proof" that I have this illness. After my husband would not accept it, I went to my mother, sure that she would stand by me, but she talked to my husband and is now siding with him. My own mother! My sister's exact words yesterday were "Well, Ang, what's your proof that you have this?" I was so shocked! What do I do? I guess my question has to be this. What should I have the doc test me for and rule out to convince them we've finally found my problem? I've been tested for Lupus, and Rheumatoid arthritis, but what about EBV? Please, if anyone could give me info about the tests I need it would help me tremendously. I feel almost like I've been betrayed. They're treating me like a mental person. HELP!
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Angela
Answer:
So sorry to hear this. Unfortunately, this is the attitude of many in the general population. Two suggestions. One, you will have to educate them. This means understanding the disease yourself by doing research. Additionally,there are many good books that have been written about CFIDS and this very problem - unsupportiveness and/or skepticisim that it even exists. Two, you can print out material from the CFIDS Foundation (by doing a search on ******) and suggest they read it. Ultimately what is needed is another name for the illness (this is being worked on by the CFIDS organization)so that people will not think that it simply means being tired.
I have had CFIDS for 11 years. Prior to this I was an athelete and ran a very successful consulting business. Needless to say my life has changed drastically since then. I am on disability as I was no longer able to work. A return to my previous athletic pursuits is out of the question as well as exercise exacerbates my symptoms. I am a person living with a complicated illness that very few people understand. Most of the time I am unwell in varying degrees. When a bout is severe it can last 4 or 5 months. CFIDS symptoms are systemic and effect every operating system of the body. We need more research to understand this devasting illness and to develop ways to inform the public about its severity so that people such as yourself will not have to endure unsupportive attitudes from their loved ones, which only adds to their stress and the continuance of their symptoms
I wish you all the best!
Peregrine
[This message has been edited by peregrine (edited 09-21-2003).]
Answer:
That is terrible. Sit them down and tell them how your feeling. Say you need their support. Give them a booklet each on CF and the symptoms, lifestyle restrictions, treatments, problems etc and get them to read it.
Answer:
thank you both for your help and suggestions. I know now that it is going to be a long uphill battle with this illness, including the one I have to fight in order to be taken seriously. Hopefully science will give us a break and learn more about this disease to let the world know what we're all going through. Thanks!
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Angela
Answer:
Hi Angela,
I just found this board and have been doing lots of reading on everyone's situation. Was wondering how you are doing/feeling?
I was diagnosed with chronic active Epstein Barr Virus causing secondary CFS about four years ago. You may want to have the blood work done to see if you have Barr.
I can totally relate to how you feel and the fact that people think you are nuts or faking. I get tired of the "you don't look sick" remarks, etc.
You have no idea how happy I was when the Dr. found the Barr and I had a test to "prove" that yes there really was something wrong.
I wish you the best and hope you are feeling better.