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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.
Thanks for sharing your story, Carol. I can relate. It's really hard to express what it's like for us ... but you did a good job!
ReplyDeleteCarol did a great job of expressing how ME/CFS impacts many with the illness. I strongly agree with her plea for research into treatments. Also, please remember that you only hear from those of us who are well enough to do some outreach. When simply chewing, or listening to a person talk, are overwhelming there's nothing left to expend in advocacy. Imagine trying to will your car to run when it's out of gas. Will your lights to come on without providing some power source. Some ME/CFS patients experience that frustration when they simply want to move their body from one place to another. The mind pushes and pushes --- but the body refuses to respond. Add to that - for some of us - chronic pain. Take a person who has fought against the ups and downs of a life-time with this illness to achieve graduate degrees and professional success in one or two areas who is then reduced to a stereotype when this illness takes everything away. Add the stress of being unable to earn any income, having tens of thousands of dollars of medical bills (even with insurance) and experiencing the social isolation from constantly feeling like the racer you see collapse after crossing the finish line of a long-distance race. Even if there's a day with a little more energy it's taken up with doing laundry or preparing food to have on hand or taking a bath or shower or tidying at least the area around the bed or couch - not an atmosphere in which one wishes to be seen even by friends. As Lauren Hillenbrand wrote "it's a matter of dignity." You then have just the briefest glimpse of how horrible this illness can become. Fresh, open minds are sorely needed to take on ME/CFS.
ReplyDeleteAnonymous, thank you for speaking out for all of us who are NOT "well enough to do some outreach" for ourselves. You certainly hit the nail on the head with that one. Most of us are too foggy, too weak or too sick to sit down for extended periods of time, trying to advocate for ourselves. The stress can be overwhelming. The task seems insurmountable. When you talk about the energy it takes to turn yourself over in bed sometimes, that is so true. What a great way to explain the fatigue/muscle weakness aspect to people! I am so sick of people saying they are "tired" too and that maybe they have CFS. It has been a 35 year struggle for me. You would think that by now, attitudes would have changed. We need more people who don't have ME/CFS to stand up in our corner and help advocate for us.
ReplyDeleteSomeone just said to me today about me not working in the election. Maybe you don't care enough after I had told her about my chronic fatigue syndrome and she had talked about her problems with fibromyalgia. I guess it is just too complicated a disease for most people who haven't experienced it to understand. And of course mental or physical weakness without obvious cause has always been taken as a sign of moral weakness. So I guess it is just something that has to be accepted but I am afraid I complain and then even my best friend recently said that she was ashamed of me for suggesting that I was disadvantaged. Well there it is and what can you do. So I have taken this opportunity to whine. It is necessary sometimes it seems!
ReplyDeleteThank you to all of the fellow patients who have commented on Carol's story. It's so important to have your voices in the discussion and it definitely keeps me inspired to keep working on behalf of research to improve all health.
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