The CFIDS Garden, Spring '97

Who Am I? The Identity Struggle

By Sandy Becker

Originally published in Youth Allied By CFIDS, Spring 1997

At various times during my battle with CFIDS, I have attended social gatherings and encountered strangers who are quick to inquire about what I do. This is a natural part of the social process and one that I enjoyed as a healthy person. But, as a CFIDS patient, it is a process I learned to dread.

When I took courses at my local university, I was quick to label myself as a "University of Michigan student." This brought up the topic of what I was studying, which I'd answer with, "I hope to get degrees in photojournalism and math." I'd quickly change the subject before it occurred to my new acquaintance that the U of M doesn't even have a photojournalism degree program. I felt deceptive in my answer but I did not want to explain my life to strangers.

I lost my easy answer with my decision not to attend school for a while due to unstable health. At my first social event as a non-student, I fumbled for an answer to questions about my life. In the absence of a job or school, I struggled with defining who I am. When asked what I do, the best answer I could come up with was, "Well, I have medical problems, so…" My new acquaintance who had looked at me with such grand anticipation, perhaps expecting me to say I was a botanist or an opera singer, now only had pity in his eyes. Not only did I have medical problems, but I implied that I had no life, no sense of value or accomplishment. Almost immediately, a voice in my head was screaming at me, "Hey, you do stuff!" But, I wondered if any of the stuff I did was worth mentioning.

A lot of thought has brought me to the conclusion that, indeed, the "stuff" I do (music, photography, newsletter publishing, etc.) is as much a part of who I am as any job would ever be. Just because I don't get paid for it doesn't mean I can't say that I do it!

I do not anticipate ever making money playing the piano, but I will always be a musician. In fact, I've probably spent more hours actively studying music and practicing the piano in my lifetime than any other activity. So, one day, when a man I was talking to at a medical center asked what I do, I told him I'm a musician. He inquired what instrument I play, how long I've played and who my favorite composers are and was surprisingly fascinated by everything I said!

Another day, I told someone I am a photographer. Having not yet earned a degree in photography, I was a bit hesitant to say this. But, I have had my photos published a few times now and I've begun establishing a reputation in the photographic world. Photography is certainly part of who I am and who I want to be. I will admit, though, that saying I'm an "aspiring photojournalist" feels more like the truth, and is a great answer too!

On yet another occasion, I told a former classmate that I am an editor for two medical publications. And, in my high school alumni directory, my name is followed by the words, "Publisher, The CFIDS Advocate."

I think all of us struggle with defining who we are because our ability to go to school or work is often so limited. But, we all have talents and great qualities that are so much a part of who we are. We should be proud of what we still accomplish and hope to accomplish despite CFIDS.

I know one thing for sure. CFIDS is not who I am, and the last thing I want to do is identify myself as a sick person. That is the attitude I possess and want to portray to others. Later on, as I get to know someone better, I always tell them about my medical problems because they have a significant impact on my daily life and I don't actively try to hide them. But, I first let people get to know me as a person - what I do and what I plan to do - in hopes that they will remember me as this really neat, interesting person who just happens to have CFIDS.

One of my healthy new friends said to me last year, "There is so much to who you are that I have a really hard time remembering that you are even sick!" I think he was surprised when I gave him a huge hug and said, "Thank you." His words meant the world to me.