I Wouldn't Choose To Live Like This!
By Lorie Woods

Thanks for publishing Robert Joe Stout’s article, "CFIDS from a Husband’s Point of View," about the impact of his wife’s illness on their lives (November CFIDSLink).

I have been fighting CFIDS since early 1999. I’m married and have a 16-year-old daughter. I have to admit I get very angry that this disease has put my life in utter turmoil. I try to control my anger. It’s no wonder most people don’t believe those of us with CFIDS are so sick. Some days I can’t believe what it does to me. Those are the days I can’t raise my arms or legs to make it to the shower, let alone work, cook, clean and do all the other routine things I used to do.

I had to quit working, which has been so devastating to me. For 12 years, I was with Blue Cross and Blue Shield, where I worked my way up the ladder. Then wham, I could hardly function. I started sleeping at lunch time, then I couldn’t stay awake at my desk, then I couldn’t remember things that once came so easily to me. I was afraid I was losing my mind. The fatigue was unreal. Then the pain started, first my legs, then all over my body. I believe the worst pain was in my pelvic area; it felt like a bad bladder infection. But after numerous trips to the doctor and no abnormalities in my tests, the doctors just concluded I was depressed. I kept telling them, "I’m not depressed!" They had no idea how to help me.

After seeing two urologists, enduring laparoscopic surgery to check for endometriosis (finding no signs of it) and making yet another trip to a rheumatologist, they finally concluded I had fibromyalgia in my pelvic area, causing the excruciating pain. I could go on and on about the unusual symptoms I have, and problems with health care providers, but what really gets me is the reaction the public, friends and family have to my illness. People don’t realize what it’s like. When I don’t feel like talking on the phone, visiting with people who show up at our house unexpectedly or making it to family events because I’m too exhausted to shower, brush my teeth, get dressed and fix my hair, no one really understands.

My husband broke his neck in 1996 on an ATV and was paralyzed at first, but he regained his ability to walk and move, although he struggles with pain and nerve damage to his spinal cord. I helped him when he couldn’t move his arms or legs and tried to put myself in his place, but I guess men are different. He gets tired of hearing what else is wrong with me. He has gotten to the point where he doesn’t want to read anything about my CFIDS. He refuses to read the article in CFIDSLink about a husband’s point of view. It makes me angry that he wouldn’t want to read about how other husbands cope with this terrible illness, but I have given up. All I can do is hope he understands.

People think I’m antisocial now and that I just don’t want to do anything. This is not true. I would give anything for this fatigue to disappear so I could go back to being normal. People get mad if I can’t do things for them like I used to. They say, "You have given up on life." Or, "Staying in that house and lying around isn’t going to make you better. You just need to get out and have fun." If it were only that easy! Why don’t they see I wouldn’t choose to live like this! I cry a lot when no one is around because people don’t understand. I guess that’s why I have so much anger within myself. It’s awful, but sometimes it’s easier not to be around people than it is to endure the stupid things they say to you. I just end up mad and more stressed out, and anyone who has CFIDS knows this just makes the condition worse.

Why can’t the public be shown that CFIDS is as bad as MS, or lupus? People wouldn’t condemn us like they do now. I blame the medical profession and the media for this. Maybe someone will get through to these people. Until then, I pray each night this nightmare will end, and my life will begin again. I pray there is some doctor somewhere who will find an answer to this devastating illness.

Thanks, again, for publishing Mr. Stout’s story. Good luck with your fight!