Wednesday, November 30, 2011

Sad Robot Disease

Having an invisible illness can be a daily struggle. When taking public transport or using my handicapped placard in my car I am always very aware of what other people might be thinking of me. I don't look handicapped. I look healthy. But there are some days when I just don't have the energy level to walk through a store or I am in too much pain to walk long distances. This is when I get the 'looks' from people or the snide comments about how "Yeah, she's really disabled." 

The hardest looks and comments can come from friends and family that don't understand, though. 

 This video explains kind of what it is like to be a person with an invisible illness. Sometimes people, friends, just don't 'get it' because there isn't anything that they can see is wrong with you. You might be in pain, suffering from severe fatigue, but because they can't see you obviously limping or using a device to help you along.

Sometimes it can be hard for them to understand just what it takes to bring yourself to a party. They think you are faking or malingering when you say that, "No, I really need to leave early."

This is what brings me back to the video. Even though the cartoon appears to be between a sad robot with some kind of sad robot disease and a not sad, but kind of mean, robot this is what a real conversation can be like. Sometimes people think you are faking, other times they want to talk about their own health concerns or another friends' and then talk about how they were able to "get over it". These conversations can be difficult to handle and sometimes it is better to get out of them as fast as possible.

Really, though, if you are going to make the effort to go out to a party. Get dressed up. Expend the energy to ride or drive over and speak with people. Talking about your health problems is not the best thing for you to do. Sometimes it is good to get out of your problems. That's what the party is for. For you to feel normal for a little bit of time. Even if you have to leave early, can't eat some of the food offered, try to make the best of it (if this involves asking the host to fix something specific for you, or even offering to bring it yourself). It can do wonders for your health.

The other thing this video made me think- I should start telling people that I have Sad Robot Disease. It would make as much sense as Wegener's current name AND I would get the same quizzical looks when I say the actual name.


  1. I can't even imagine how difficult that is to deal with. If you ever catch me acting that way, let me know.

  2. You have not and I somehow don't see you starting any time soon ;)

  3. I totally understand that. I have a handicap placard too. And get the looks. But I guess I'm just old enough to say, screw you. I totally understand how they can't see the pain you are going through. Sometimes it's all I can do to walk from the handicap parking to wherever I'm going and hurriedly sit down.

  4. It sucks, I normally ignore them, but a few times I have had to use the motorized carts in the stores and have sometimes gotten really nasty looks for it. They make t-shirts that say, "I'm not lazy, I'm on chemo, what's your excuse?" I might have to get one for those times, lol!