8 Things I Wish People Understood About Chronic Fatigue Syndrome

October marks my second year of dealing with the effects of chronic fatigue syndrome (CFS). I have learned a lot on my two-year journey and my life has changed in ways I never could have imagined. Below are some things I wish more people understood about those with CFS:

1. The illness is real. 

I will admit that before I developed CFS, I did not understand it at all. Even today, I think to myself that the only way to know the magnitude of this illness is to experience it. I know everyone gets tired. I understand that it is hard to imagine feeling exhausted all day, everyday, even after days of rest. I know that the medical community cannot figure out a sure-fire diagnostic tool, nor can it provide any salient answers as to the cause of CFS. It’s mysterious. But that does not mean that it’s not real. Believe me, and the millions of people suffering, that it is real.

2. It’s not “all in my head.”

Unfortunately, I hear this one a lot and it’s often used as a dismissive way to minimize the symptoms I experience. Now, these folks may be right in some sense of the term because the brain is so immensely powerful and the answers to CFS may very well be found in it. But it’s unfair to insinuate that I am bringing this illness upon myself in some way. CFS is a physical illness and affects many aspects of your physical and mental well-being, from the endless fatigue, brain fog and memory problems, to the joint aches, nausea and night sweats. It is not just feeling tired, and it’s not a figment of my imagination.

3. It’s easy to feel invisible.

I have good days and bad days. Some days I knowingly push myself too hard because I want to feel some semblance of my old normalcy. I pay for those experiences in the days and sometimes weeks to follow. Please do not assume that because I went out to dinner with my closest friends this week that I am miraculously fine. What you do not
see is the fallout from that exertion.

4. Check-ins are a lifesaver.

Being sick with a chronic illness is not like catching the flu or even recovering from a major medical problem. By its very name, a chronic illness is long-lasting and
ongoing. The friends and family who continue to check-in on me from time to time have been a lifeline. The power of having someone close to me ask, “How are you?” and truly care to listen to the answer has been invaluable and has seen me through the toughest times.

5. It’s exhausting.

Now your first response to this may be “of course,” but allow me to elaborate.  Think back to a time where you completely overdid it. Maybe you pulled an all-nighter to write a paper, burned the midnight oil to finish a work project, or just stayed up all night binge-watching “Game of Thrones.” In any event, think back to how you felt — limbs heavy like a weight had been placed on them, mind just slowly firing, that feeling like you need six cups of coffee to be human again.  It’s no exaggeration to say that people with CFS feel this way most of the time, even after ludicrous amounts of sleep and rest.

6. It’s not helpful to comment on my looks.

For me, a big part of my CFS has been gastrointestinal problems. I am constantly nauseous. I have to force myself to eat. As a result, I lost 25 pounds. Please, when you know someone has a chronic illness, do not tell them, “Well, you look great” or “But you look healthy.” At my worst, I weighed less than I did as a 12-year-old child. I get that I may not appear “sick” on the outside and that our standards of beauty are such that apparently being underweight on my BMI is “looking good.” But when someone tells you they are dealing with a chronic illness, try keeping comments about the way that person looks, good or bad, to yourself.

7. It’s OK to be genuinely curious.

There is often a lot of focus on things you should or should not say to someone with an illness. But I have always found that the best conversations are those with people who genuinely care to understand not only what I am going through, but also the specific frustration felt by those suffering with CFS relating to the medical uncertainty of it. If you’re curious to chat about the mysterious nature of the illness, the lack of a miracle cure, or seek to better understand what I’m going through, I’m interested in discussing because it’s nearly always on my mind.

8. There are a lot of us.

According to the Center for Disease Control, more than one million Americans have CFS, which is more than those who have multiple sclerosis, lupus, and many forms of cancer, and tens of millions more have a CFS-like condition. Because diagnosing this illness is so challenging, I’d imagine that the actual number is much, much higher. We need comprehensive research to uncover the mysteries of this illness, and we need to bring awareness to a broader audience of people about CFS and what it means for those who have it.