A week or so ago, a gentleman from the church we both belong to asked about my health. I was walking with a cane and he was concerned that I had a reccurrence of the cancer I had about eight years ago. I told him that I did not, that it was Fronto Temporal Dementia. His response was "You do know that if you know you have it, you don't have it very bad, don't you?" I replied saying that while that is often true for Alzheimer's Disease, it was not with FTD. He turned and walked away from me. Apparently trying to educate him was an insult because he knew more than I did.
I have learned from people like this to never question someone's word that they have an illness. While I realize many have good intentions and are trying to make me feel better, hearing over and over that there doesn't seem to be anything wrong with me, that I look really good, hurts. It comes across as though they think I am lying. No, I am pretty good at smiling and faking it, at least for short periods of time. Even that is getting more difficult now that I am having more and more speech problems.
I do not want sympathy and certainly don't want people "fussing" over me. I just want people to not dispute that I have an illness, even though they have never heard of it. It amazes me at the numbers of people who are close friends or family members who don't bother even googling it to get a little information. Several have actually told me, "I guess I am in denial that there is anything wrong with you." I understand their not wanting there to be something wrong, but their denying it just makes me feel more isolated. It seems that in order for some to deny that I actually do have a life threatening disease, they have to avoid me totally.
I get so tired of getting the disgusted look like people are thinking I am drunk because I can't walk right. I get so tired of people getting frustrated when it takes me a long time to get a sentence out or when they jump in and try to finish the sentence for me. What they add is usually not the point I was trying to make at all.
I have had several people tell me they have missed me at social meetings. I am assuming they are being truthful. I, however, cannot force myself to be truthful in return. My response would be, "Then why did no one include me in a single conversation the last time I was there?" or "Why, when I left my purse behind and someone had to return it to me, did she seem like I was a royal pain in the rear?" No, I lie and say that I forgot about the meeting or some flimsy excuse. I have noticed, though, that none of them call to remind me of the meetings. The last meeting I attended, I was trying to do something, and because I was doing it slowly, someone jumped in and kept telling me what to do and doing things so quickly that I lost track of what was going on. What I was trying to do was sell some items that I was regularly selling to earn money for the causes that our group serve. In the end, my inventory was totally messed up and I had to recount everything the next day. She could have helped by assisting me, helping me calculate the balances due, but doing it at my speed. I have since resigned from this particular fund-raising duty.
I will quit ranting. The purpose of writing all of this is to stress the importance of treating someone with FTD with respect and consideration, not dismiss them from your life. Most of us do still have things to contribute, despite our limitations.
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