I don't feel like my family understands any of it. I have several other medical diagnoses. One brother thinks that my PH and CHF are just more labels I have manipulated doctors to paste on me. My brother who has trouble breathing, since a portion of one lung was removed, now understands what it's like to be short of breath. My sister talks to me more than my brothers do. She tries to understand. I'm not sure if she really gets it.
It is difficult to understand the complexities of what we feel. Our language uses the same words for sleepy, tired, fatigued....all words we use to describe our lack of energy. I didn't understand what "crushing fatigue" meant until I felt it.