I don’t know if my husband thinks that I am being lazy or if he understands that I have legitimate difficulties. Do I use my disease as a “crutch”? I don’t feel like I do but I think that maybe Wayne thinks this is true. When I try to explain that a certain difficulty is happening because of symptoms of Huntington’s, and try to explain how I know this is true, sometimes I feel like he shuts down and doesn’t want to hear it. Or he doesn’t let it sink in far enough to let it be true. So he yells out of anger and frustration. I then feel like I am being scolded like a child. Then I shut down. But am I really not seeing an important piece of the puzzle? Maybe I am using this “excuse” too much?
I have HD. I have a right to feel the way that I do right? I can validate the areas in my life where I struggle with medical factual documentation back-up. So what is the big problem?
One constant battle that can occur between you and your caregiver or spouse is the plain fact that they know you as one person….but do they really understand that you are evolving into someone new as this disease progresses? Can they understand that they can’t use the same methods of “motivation” to get you to do things that you used to have no problem in doing before? Some scenarios may involve “boot camp” motivation (i.e. “Get on your feet Soldier!!!”), others may involve the more nagging type of motivation.
The other side of this scenario is our responsibility towards cooperating. If you ask yourself, I’m I really unable to perform this task or am I just making excuses and you can honestly say “well, maybe I am being a little difficult,” then this is your time to make the right decision and just do it.
When I look back to other people that I know who appeared to use HD as a crutch, I feel bad because now I know what they were going through. I would get so mad at people who tried to apply for social security and disability when I thought that they really probably didn’t even need it yet. When I was a young girl, I was often upset at my grandmother for “going through men”. Why couldn’t she just stay with the guy who really loved her and just be happy? I now totally understand…but, it’s human nature to judge a book by its cover. If outwardly, someone appears to be healthy, then we judge their abilities based on that perception. It’s so hard to really fairly assess someone based on mentally disabling symptoms of HD. It’s so exhausting.
I feel as if it’s a daily issue that I struggle with but I try not to let it destroy my well-being. Truthfully, I feel that if we live our lives where we are using our disease as a crutch and we continue to follow this path, it will lead to our own self-destruction. And, more importantly it incorrectly portrays a rare and fairly unknown disease. We want to factually educate the community. But there is a very delicate balance.
1 – We want people to take us seriously. Bottom line. This disease sucks ass. It’s terrible. I want everyone to look me in the eye and say “Yes, I understand you are struggling and I believe you when you tell me about the struggles you are having. So let’s work together to make the best of things”
2 – We don’t want people to give up on us. The old saying “crying wolf” comes to mind. If we lose our support far earlier in the game….we are really going be screwed when the more difficult symptoms happen. This is why communication and genuine cooperation is crucial. Do not use excuses. If you are a difficult person to live with, now is the time to stop being difficult. Hug and kiss your loved ones every day and tell them how much you appreciate them. Be genuine. Be real. Be cooperative.
3 – We don’t want to scare the shit out of people who are at risk for this disease. I feel very strongly that if you are constantly dramatizing your situation and complaining that this disease is terrible around those who are at risk (i.e. your children, cousins, or brothers and sisters etc.), it is traumatizing. We want to motivate them to stay informed. We want to inspire them to keep a healthy and hopeful outlook. I hate to sound so insensitive, but I’ll be honest….we don’t want people to hide in the dark when basically…we need them for clinical research studies. Ouch. I said it but it’s true. I also feel that those at risk individuals will have a better life if they stay informed and hopeful.
Thank you for all the wonderful comments and words of encouragement. I wanted to say that my blog has reached over 2000 views from 20 different countries. Please continue to share my blog with those who don’t have a computer or those who you think may need additional education.
Please also follow my blog if you haven’t yet, that way you’ll get an email notice every time I post something new. I’ll try to write once per week. I have a slew of great things to discuss with you. As always, I am not saying that everyone is the same but it’s so nice to share things that may be uncomfortable to talk about in other situations. If there are special cases that you would like me to blog about, please let me know.