Two weeks ago, I talked about how sounds can be translated into pain when one has FTD. Today, I would like to talk about the sense of touch, which can have the same effect.
I hear all the time about the "comfort of touch." It is not uncommon for me to hear or read of someone praising the "healing touch." Another one I see often is that if you are dealing with an agitated person, "try a gentle touch" to help calm them.
I am the opposite. I often pull back when someone touches me, even from a gentle touch to calm me, This touch does not calm me, it does the opposite. It magnifies the aggravation or stress rather than easing it.
Just as explained that sounds can sometimes be translated into pain, touching can do the same thing. I did a little research while preparing to write about this. Turns out, there is even a scientific terminology for this, tactile dysesthea" which is defined as an unpleasant and distorted sense of touch". It actually made me feel better to know that there is a name for it which reassures me that I am not the only one who experiences it.
The absolute worst time to try to touch me is when I am stressed or agitated. A normal reaction for someone observing the signs of this stress is to reach out and touch. Often this is just an easy pat to the shoulder or arm or, the most horrible, an attempt to give a hug. My reaction can lead to truly hurting the feelings of a loved one. Here they are, trying to help me settle down or to reassure me that everything is okay, and I react like they have slapped me.
While, the support is appreciated, the touch brings a total sense of pain to my body. Like with sound, it is not a specific place or area that is painful, it seems to be more like nerve pain. Every bit of my body is feeling it. The best thing, in an instance like this is to, rather than touching me, is to calmly ask me if I am okay, if there is anything they can do to help or if I would rather be left alone. If you want to offer a hug, ask first.
This can happen anywhere, anytime. It can cause me to appear as though I am totally socially inept. If a casual acquaintance or someone I just met attempts to give me a hug or even just a touch, I can freeze up or jerk away. It is difficult to explain to someone that I am not rejecting them and that it is just a fear of being touched. As soon as I react like that, they are already shying away from me before I can say a word. So, on top of the sensation of pain, I have the embarrassment of someone walking away from me.
It is difficult for a loved one to understand that, when they try to give me a reassuring hug or pat on the shoulder, that I am not rejecting them. It is the touch that I am rejecting. It is pretty close to impossible for most people to understand that it is pain that I am feeling, not comfort.
I had an experience with this a couple days ago. I needed to buy a new printer and was determined to install it myself. Before FTD, it would have been ten minutes to get the darned thing out of the box and less than that to get it working. This time, it was a disaster. Of course, the more time it took, the more frustrated I got. The more frustrated I got, I took it out on the printer, the computer and my poor husband who attempted to help. It literally took me five hours until I had it up and running. When I finally got it, my thought was "Of course, I knew that's what I needed to do!"
I did have a wonderful feeling of accomplishment, that I did it myself. It's just that when I was done, I had to clean up all the papers and wires I had thrown around the room. I also had to apologize to my husband and explain, again, why I screamed at him and rejected his reassuring touches as well as his offers to help.
I wish I could say this is a rare incident, but it is not. I am an equal opportunity offender. It happens with anyone, anytime, any place. It is just one more way that this disease leaves me with a feeling of embarrassment and worthlessness.
This pain from being touched is not the only touch-related issue with FTD. Another totally different issue that affects many is a need to constantly touch things. It can be something like repeatedly tapping, rubbing or stroking something. It is an obsessive compulsion, another symptom of FTD. While this most likely does no harm, it can be extremely frustrating to the people around them. It can also be frustrating to the one with FTD because they often realize they are doing it but cannot stop.
An even worse touch-related symptom is the intense desire to touch others in a sexual manner. This stems from the symptom of hyper-sexuality that is, unfortunately, pretty common to those with FTD. This symptom can be extremely embarrassing on both sides of the touching. It can also destroy marriages and relationships.
Fortunately, not everyone, with FTD or not, reacts the way I do to touch. To many, that reassuring touch or healing touch is a very effective tool. Touch can do wonders. It can also hurt. The important thing to the one with FTD is to know they aren't the only one. Likewise, the important thing to know for the loved ones is that it isn't deliberate.
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