This is a tough one, because it can apply to so many aspects of what goes on in my head. I could tell you what my inner-voice says when I consider going back to school, or what I thought the very second one of my babies called me “mommy,” but I’m not going there. However, when it comes to me and about me in general, I can tell you this: I am female. And because it seems trendy to preach about sexual orientation, I was born a female, and I am straight. Perhaps, I am middle-aged, and I’m a military wife and mom of 2 kids. I love to quilt and have a huge stash (a/k/a fabric collection for you non-quilters). Within 2 1/2 years of turning 40, I became and adult orphan. If you have not lost your parents, you will not understand what this means. It means my parents are not here to sing Happy Birthday to me over the phone every year, and I really loved when they did that. I keep from the world that I have a disease that I cannot seem to find time for in my life. I think I’m mourning for the simple things I used to do without preplanning when and how I will take my medication or pre-napping before my next action. I sometimes feel like everyone knows about my secret disease when I walk into a room. For the few that do know, I feel like they are always sizing me up to see if I look different. It hurts my feelings–for some ridiculous reason–that after I finally feel comfortable and secure enough with a friend to take the plunge and them let them in, that they respond by telling me that I do not look like I have MS. It pains me as an insult would, because I do not ever want to look like I have any affliction and am terrified of the possibility or probability of actually looking the part. So, I wonder, if the response after revealing the secret to friend, will someday be something other than that friend telling me that I do not look like I have a disease; when that happens, will I then be ticked that I look the part? When I hear that I do not look like I have MS, it confirms to me that someday I will. I do not want to look the part of having any illness, and when I’m told I look fine and disease free, out loud I say to them that I will never be at that point, but inside it is a very vivid fear that I drag around, because there are plenty of times when I am a neurological mess and look awful, but I either stay home, or I don’t get out of the car unless I absolutely have to, and I try not to engage in conversation too much because I sound like a babbling moron who either forgets what she is saying mid-sentence or just forgets random words–without any warning to me, the speaker. And sometimes, when I can’t avoid showing up (this happens on a daily basis), I think people must surely assume I am a closet alcoholic or drug user because I seem to be somewhere out in left field unable to focus on normal chit-chat. Those are the times I want to be invisible. I’m on a see-saw with MS–sometimes I’m way above it, and other times it is way above me.
Do you have a patient with “radiologically isolated syndrome” — and, if so, what do you tell your patient?