It’s extremely difficult to write about my relationship with my mother’s illness because I have lived with it for so long that it is simply a natural part of life. Many of my memories of growing up revolve around playing games with my siblings seeing who could be the quietest while my mom rested. At the time I didn’t really think about it – it seemed perfectly natural that she needed to spend long hours in the day lying down in her room with the lights off – and we were just happy to play together. Only looking back do I realize the reason my mom needed to spend so much time resting; she has a relatively unknown disorder called Chronic Fatigue Syndrome (or CFS).

            For many many years my mom went to countless doctors, constantly describing her condition, but none took her seriously. Because her symptoms were not visible, even her own family thought she was simply making it up, or else suffering from depression but not willing to admit it. Only recently has CFS begun to gain recognition and she is finally able to go to doctors who believe her and attempt to help her with this disorder. Although she has come to distrust many aspects of the medical community, it is still incredibly important that CFS is beginning to gain recognition so that she can receive the help she needs.

            It is ridiculous to me to even imagine that my mother would have spent the past 25 years of her life lying about the struggles she faces every day. However, for many people it is difficult to acknowledge and understand that she is sick, because she has few outward symptoms. And so I have learned to avoid talking about my mother’s illness. It is not that I am ashamed, but I don’t want to see that look in people’s eyes. The look that says so clearly that, while they may be expressing sympathy and concern, inside they are wondering if I’m overreacting or that her illness isn’t just all in her head. After all, we all get tired sometimes! I can’t remember how many times I’ve heard people say “Oh wow, I get really tired too! I wonder if I have CFS?” My mother’s illness is not a joke. She is not simply tired; she has been exhausted (among other things) for 25 years. It is not all in her head. It is serious, and these assumptions and beliefs about what constitutes a “real” disease (aka something that is outwardly visible) have meant that the medical community, when it could have been studying CFS, instead denied its existence and claimed it was all in her head.

            The lack of understanding about invisible medical problems is dangerous and harmful. My mother is one of the strongest people I know. She has read countless texts about CFS in an attempt to teach herself about something that not even doctors understood, she has stood up against people in the medical community and even in her own family who refuse to believe that she is suffering, and she raised six children on her own through it all. And so it is difficult for me to discuss the problematic medical community, and the stigma surrounding ill bodies, because this is my family we’re discussing, and this is my mother’s lived reality.