FTD has got to be one of the most difficult diseases to explain to someone. I have written and said so many times about the comments I get, like "You look so wonderful, are you sure there is anything wrong." or "You seem fine. Can't you help me with this like you always did before."
This part of the difficulty is not just with FTD. When I was fighting cancer a few years back, I got the same thing. I tried to back away from some of the committee work at our church but met so much resistance that I gave in and kept plugging along. They promised they would give me more help to get the things done that were my responsibility. I should have known better. I actually walked away from an event one day. It was being held at a church member's farm and had turned out to be a wonderful event. My friend, who was also on the committee, had actually taken care of bringing the necessary supplies, paper products, basic foods, coffee pot, soda, etc. She did this even though she was recovering from surgery. Part way through the event, she became ill and somehow, once again, it was assumed I would take over. I was worn out just from carrying my folding chair down the hill to the barn where the picnic area was, so there was no way I could deal with everything. It seemed as if everyone was barking orders at me. For a while I was able to keep everyone satisfied. My friend had brought soda, bottled water, coffee and hot chocolate. The supplies had dwindled, but it was nearing the end of the event. There was still some water and plenty of coffee and hot chocolate. I was ordered to run to town and buy more soda. It was the final straw, I picked up my chair, hiked back up the hill and left. I never did organize another event. I wonder how long they waited that day for me to show up with a trunk full of soda?
This is the kind of thing that I still get. People assume that I can still do everything I used to do because I "look fine" and all. I do not keep my disease a secret. I talk about it every opportunity I get to try to get the word out to the public that FTD exists. Very few of the people I know have not been told about my brain disease. Yet when I cannot keep up with things, start stuttering and searching for words, or interrupt what they are saying because a thought has popped into my head, they become resentful and sometimes actually confrontational. When my legs don't get the message from the brain to move and I stagger or stumble, I get looks like "What is wrong with her now?"
I totally understand these things from strangers or people who do not know me well. I even understand that many people whom I have told about my FTD have never bothered to find out what it is by looking it up or reading literature I have given them. I feel hurt that they haven't made the effort, but I understand their ignorance of the disease.
It is the family and friends who I have attempted, many times, to explain the disease to and the limitations that come with it, that just frustrate me to no end. When listening to someone go on and on about a subject, often something related to the subject will pop into my mind. Yes, it will seem rude, but I will often just burst out with what I am thinking. It can be something to agree with what they are saying and sometimes to disagree. As many times as I have explained it to some people, they still get angry when it happens. People, it is not me interrupting you, it is the damned disease! I try and try to stifle the irritating things I do, but most of the time it does not work. What is so difficult about saying "Okay" then going back to what you were saying? I don't need you to tell me I am being rude or tell me "stop and let me finish." Well, actually, you could say that. Just don't say it in an insulting way like was done to me today by someone I thought understood my disease.
I am doing the best I can, folks! Some days are better than others. Some days I can actually go to the grocery store. Some days I can actually clean a room or two in my house. Some days I can have a "proper" conversation with you. Notice that I said "some" days. Other days, I am lucky that I get out of bed and get dressed. Yes, if you stopped by and saw me sitting on the couch, I might look "normal" to you. (Whatever normal is supposed to be..) If only it was visible how none of my muscles seems to want to work that day, how I feel totally exhausted which leads me to feel totally useless and depressed. Yes, I do stay in bed for twelve hours some days. Some days it takes my body that long to recharge. Some nights, out of the twelve hours, I will have had six hours of sleep.
How can we explain or get across to people that there are illnesses that cannot be seen, illnesses that cannot be fully understood until you have one, illnesses that slowly destroy your brain and steal away the abilities we always took for granted? How can we not feel hurt when we hear you make disparaging remarks to others as you turn away. Our brains don't work properly, but we can still hear. We can also sense things. We can tell when you are repulsed or when you are irritated. If we had a broken arm and a broken leg, you would see it and you would understand and make allowances for us, even offer assistance. Well, guess what, a broken brain is worse. It doesn't heal or get better. We are stuck in a body that doesn't work right anymore, knowing that it is going to kill us, probably within a few short years.
Some days it makes us extremely angry and today is one of those days for me. I think it is justified to feel this way some times. I don't sit around and feel sorry for myself, but I do get angry!
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