Falling for a Person with CFIDS

By Sam Oldham

When the CFIDS Association asked for stories from family and friends of people with CFIDS (PWCs), I decided to share my story. I fell in love with a PWC.

My story is a little different from most because I wasn’t with Victoria when she was diagnosed with CFIDS. She had been very ill before we met. Doctors at first told her she had everything but CFIDS, with one even telling her she didn’t have long to live. She was in bed for months. Finally, she got a CFIDS diagnosis about 10 years ago.

I met Victoria five years ago, and we soon started dating. It was as we were getting to know each other that she started sharing more details about her disease. Of course, I had heard of chronic fatigue syndrome, but since I’d never known anybody with it, I just assumed it was only bouts of extreme tiredness. As I noticed more symptoms with Victoria—stomach problems, headaches, spasms, fainting spells, etc.—I began asking more questions, and she eventually referred me to the CFIDS Association website. I was stunned when I read all the symptoms and conditions associated with the disease. My initial thought was, “How on earth does she do so well, all things considered?” 

I started going to all her doctor’s appointments with her—an endless battery of blood and urine tests, ultrasounds and MRIs, to name but a few. Again, I was amazed at her strength. Fortunately, she has a wonderful doctor in Los Angeles, Dr. Galpin, who understands and believes her, and that certainly makes it a little easier for us both.

Even though I understand the illness much better now, I can’t say that I’m still not a little scared every time I encounter something new with her. I’m the guest services manager for a ski resort in the southern California mountains. Victoria can’t commute during the week, so she has an apartment in Los Angeles. There are times when I’ve had to drive into the city to bathe her and carry her to bed because she was so exhausted or she was having fainting spells. A few weeks ago I thought she was having a stroke. She shook violently and lost her capacity to talk. I’m sure my blood pressure was through the roof! 

On her good days, Victoria has relatively high functionality for a PWC. Despite everything she goes through, she is going to graduate with honors with a B.A. in English literature in December of this year, and she made the Dean’s List and the National Honor Roll. She works full time at a medical malpractice company and also got an additional job recently as a staff writer for a local magazine. She is going to get her master’s and will teach at a community college, somewhere she can make a difference.

Although she tries really hard not to let the disease get her down, sometimes I’ll just look at her and I can tell she feels horrendous. It happens a lot more often than she lets on. Once I had to feed her, and Victoria was just mortified. She said, “I can’t believe I’m 28 years old and you’re having to feed me.” She was embarrassed and apologetic. But I just tell her that it doesn’t matter. She won’t let her illness define her, so why would I let it define her? She is much more than a bundle of symptoms called CFIDS.

Victoria and I are to be married in the summer of 2005. She has a disease that more than likely will be with her for the rest of her life, and although it’s a big disease, it’s such a small part of her. I’ll be marrying her already having a pretty good idea of her health, and yet I can’t wait to make her my wife.

We hear that about a third of PWCs get better, a third get worse and a third don’t change. The two of us have talked about the fact that in years to come I may be pushing her in a wheelchair. Or there may be times when we can run along the beach together. We just don’t know what the future will hold. But that’s true of every couple, so Victoria and I will face whatever comes—together.