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New Voices (NV): How would you describe CFS to those people who don’t understand it, especially those who are skeptical of it being a real condition?
Carol: CFS is more than just being tired. It’s not just a minor inconvenience that you work around. It’s an everyday occurrence that is often more debilitating than just a nuisance. CFS demands serious lifestyle changes. Fatigue is definitely a large part of it, but it usually isn’t the most problematic symptom for me. Digestive issues, muscle and joint pain, vertigo, migraine headaches, feeling cold, having trouble focusing, memory problems, and many other symptoms find their way into daily life for someone with CFS.
NV: What kind of limits do you face in your daily activities? Are there particular things that people might otherwise take for granted?
Carol: A large percentage of people with CFS are generally type-A people, so the limits in daily activity are the most frustrating part of the illness. For years, I was incredibly active and involved in everything. I’d play two sports during the same season, while taking dance lessons and staying involved in school clubs and church. I was pretty much never in my dorm room during college because I was involved in so many activities. Now, I can barely work full-time (with three days of telework a week), and I typically crash on most weeknights and weekends.
NV: How does the stigma surrounding CFS affect you – how you cope, who you tell, etc.?
Carol: The stigma surrounding CFS is almost as frustrating as the disease itself. The name implies that I’m just tired all the time. Well, let’s be real – everyone gets really tired at some point, especially in large metro areas with a hurry-up culture. The issue is that most people don’t get past the name of the illness itself to start with. In fact, I had one supervisor who told me that he/she also gets tired a lot and that they could probably get a doctor’s note to work from home, too. They also questioned if I was really sick at all or just using the system to make having a job easier. This is a pretty typical interaction with people who know nothing more than the name of the illness.
NV: Given your experiences, do you find yourself being an advocate about CFS?
Carol: I do, at least in my work, find myself advocating about CFS and explaining it. I’m more focused on getting through the day and keeping up with daily life, but I do find there are moments of education when I get to talk to people about the disease and get past the stigma. It isn’t something that comes up in everyday conversation, but I have talked with a lot of coworkers and family members about CFS.
NV: Do you think that the stigma surrounding CFS has kept people from coming forward and advocating about it?
Carol: Yes, that’s true. If you look at the stories you see in big media, it’s most often people who are well-established in their careers or well-known, so they’re open to talking about their diagnosis. It’s like you have to prove yourself in your work before you can talk about CFS. Because of the stigma, most people don’t want to be known for CFS, let alone advocate.
NV: What message do you have for researchers, who might themselves investigate CFS?
Carol: The research has focused a lot on whether it’s real or not, and finding the cause, but I’d like to see them move forward and look for treatments. We know CFS is here, so let’s deal with it. I don’t know if more stories like mine would help getting people interested and involved, but I hope it does.