Do you guys ever feel really silly and ashamed about the way you are coping? Like, thinking 'maybe I could do more if I push myself' or 'maybe this is all in my head' or 'am I just too lazy'
I get these feelings of self-doubt all the time. Even when I have felt really awful, I will look back at it several hours later and think 'was it really that bad?'
@bethany.s I became ill before the internet, so the only information about ME I was exposed to came from rare and inaccurate newspaper/magazine articles. I was more fortunate than most, because I was referred, very early, to knowledgeable medical practitioners. One of these was a psychologist -- recommended to help me come to terms with the impact of having a life-altering chronic illness. I remember asking at one appointment: "Don't you think it's just my stinking attitude?" His response: "There's nothing wrong with your attitude -- you're ill." It would be wonderful if you could find someone similarly supportive.
The feelings of self-doubt you described are common. I've often wondered if they stem, in part, from a type of amnesia necessary to help people cope with painful or difficult circumstances. Currently, one of my worst symptoms is multiple layers of chronic total-body pain. Yet, during the periods it is less intense, if someone were to ask me to describe the pain, I'd have difficulty doing so. Similarly with other transient symptoms, I'm often not aware they are gone until they come back.
Do you keep a diary to track symptoms? Doing so is something many doctors recommend, but it is something I've struggled with, not wanting to become a "professional patient". Nevertheless, it can be helpful in making connections between what you do, and how you feel.
The secondary benefit is that in situations where you feel the illness is all in your head and that you could do more by pushing yourself, a quick look at your diary will prove otherwise by providing a reminder of how you were actually feeling at the time. This might help to lessen your feelings of self-doubt, and keep you from pushing yourself more than you should, and ultimately doing harm.
Good luck. Over time, your self-image should become more accurate. And, by better matching your activities/lifestyle to the genuine limitations the illness imposes, you'll increase the chances of recovery. I sincerely hope you are among those fortunate to recover, sooner rather than later.
