Was There a Compliment in There?

A few days ago, I was actually having a good brain day. Plus, my chronic headache was not too bad. It happened on a day that the women's group from my church was meeting. A friend picked me up and took me with her. I even managed to fix a dish for the potluck luncheon.

Many of the women, and one man, who were there seemed happy to see me. Others just ignored me. That's okay because I realize it is because they do not know how to deal with my illness and what to say or not to say.

I was only there about a minute until I got the old standby "You look really good." Nice sentiment for someone who is not dealing with a life threatening illness. It might even have made me feel good if it wasn't said in a way that made it obvious they didn't believe there was anything wrong with me. Some of the really ignorant ones actually say "You look too good to be sick." Gee, thanks?

I actually responded to a few of them that I really appreciated the complement and that since dealing with FTD I have made a concerted effort to pay attention to my appearance. I actually dress nicer, wear makeup and pay attention to what my hair looks like. Before FTD, I was always a take me as I am person. If I wasn't at work you would see me in blue jeans, a shirt and sneakers. I take more care with my appearance, thinking that if I look better maybe they won't notice my symptoms.

When I mentioned that to a few of them, a couple of them said "Well, you must be having a good day." Again, thanks? I did respond to them that I was indeed having a rare good day. I did not tell them that after being there for two hours, I would probably have to go to bed when I got home because it will have taken that much of a toll on me.

They may as well have said that I must not really be sick.

Just as bad are the ones who take a different approach. They start telling me how they totally understand what I am going through because their neighbor's friend's aunt's mother has Alzheimer's too.

First of all, if you don't have FTD, or are not caring for someone who has it, you do not understand what I am going through. Some days, I'm not sure I even know what I am going through. Secondly, I do NOT have Alzheimer's Disease. I do not know how many times I must explain this to the same people over and over. FTD is not the same disease. Yes, they both involve dementia and they are both fatal, but there are many more ways they are different than those that are the same.

I wish people who know me well enough to know that I have FTD would actually care enough to go home and look it up on the internet. Then, they might have a small inkling of what I am dealing with every day.

Bottom line is that these are examples of the things you should never say to someone with FTD. Do not deny that I have an illness and do not delude yourself into thinking you understand what I deal with day in and day out. It is just downright rude and uncaring.

I cannot stop myself from worrying about what the people I encounter think of me when I am showing symptoms. That, however, is much better than someone implying that there is nothing wrong with me or trying to make me "feel better" by telling me how wonderful I look. The truth is that compared to how I looked pre-FTD, I look pretty bad. My face is always drawn and tired-looking. I walk with a strange gait, sometimes even with my cane. I have lost most of the confidence in myself which was always apparent to others. I don't look "good." Some days, I look better than others, but I would never classify it as looking good.

I would suggest that people say something like "You look nice today." or "You look good in that color." It just needs to be something truthful. If it is not, sorry to say but I will see right through it.