And then, I explained:
“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through. I feel as though everyone is pretending that everything is just fine. What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick. The worse I feel, the more I feel ignored and invisible.
I want to emphasize that I’m not looking for pity or coddling. I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness. All I want – and need – is simple honesty and acknowledgement.”
I also explained why it was so difficult for me to spend time with other people: “Stress and exertion come in all sorts of forms: physical, emotional, mental, social. Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can. Any kind of social interaction is exhausting for me. When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally. But it’s not personal at all. I respond the same way to social interaction with friends.”
I realized that my mother thought I was depressed and that she had to cheer me up. I think this may be true for many of our family members. They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.
Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.
To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it). My mother actually sought out a therapist who specialized in helping families of chronically ill people. I think she finally read some of the information I’d been sending over the years about CFS. And she changed her attitude and the way she treated me dramatically. Eventually, that led to changes in the way the rest of the family treated me also.
I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction. I have also tried to share information with family (and friends) about what CFS is and what its symptoms are. As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end. I feel as if I lost my family for a while there, but I have them back now.
What have your experiences been with your family?