I understand why. If you don’t want to deal right now I totally get it. It’s all situational but for my experience with Huntington’s Disease, which is rather short compared to some of you, I totally can see why you would want to wait to find out your test results. But I am asking you to consider a new approach to how you perceive Huntington’s Disease as a person who is at risk.
First let’s just come out with it how Huntington’s Disease is perceived today. It’s ugly. It’s downright trashy. It’s embarrassing. It hurts our feelings. It hurts our family and friends. It destroys our career and our professionalism. People treat us differently. Our confidence is affected. It hinders our ability to do the things we love to do. It prevents us from expressing ourselves. We have to witness our family deteriorate from it. It kills the ones we love who have it…sometimes even our own children.
Why don’t we all shut ourselves away from the pain? Should we lock ourselves indoors and hide in our bedrooms where we can crawl into our covers and bury our heartbreak deep inside? It seems like an easy solution right? Please consider that this only continues to add to the ugliness of Huntington’s. Consider the fact that the longer we hide the more likely it is that Huntington’s Disease will take us completely by surprise. If we wait too long, then it will be too late.
I understand how you might be feeling. I need you to breathe in and out for a moment….slowly.
There is a saying that I personally live by. It’s simple. “This too shall pass.”
And another: “knowledge is power.”
As someone who suffered through cancer, I had to go through genetic testing, long periods of waiting, biopsies, mastectomies, chemo, radiation, drug therapy, hair loss…you name it. I can tell you that hiding myself way from the pain was very enticing for me. Then time passed. I did what I had to do and now I am a 5 year cancer survivor. I hated that point of my life but now I feel that I can close that chapter and breathe for a moment. With that being said, I did not carry the BRCA gene for breast cancer…but I have a feeling that if my body knew how to grow cancer once then it probably will again…unless I stay on top of my personal health care. So I continue to take my preventative medicine, stay informed on latest technology, try my best to follow my doctor’s orders, and maintain a healthy lifestyle.
I have come to terms with the knowledge that I carry the mutated gene for Huntington’s Disease. But I also look at HD from a new perspective so that I have the desire to not let HD get the best of me.
Talking with some of my “at risk for HD” peers, I have heard so many sad and shocking statements due to the negative perception that Huntington’s Disease has:
“I’ve lived my life as an alcoholic or in a constant depression because I just knew I had Huntington’s Disease even though I never got tested for it. It turns out my test was negative. I’ve wasted my life.”
“I was pregnant and decided to have an abortion because I was sure that I had HD. I was right, I tested positive. But I am struggling with something unexpected: Now that we are getting closer to finding an effective treatment, I don’t know how I am going to be able to handle my past decision.”
“I’m too afraid I will get fired or I will not get a promotion if my company finds out.”
“I sleep with random dudes and I often ask them: How does it feel to be F’ing someone who might have a fatal brain disorder? I know I have it…I don’t even care if I live or die anymore.”
“Nobody wants a relationship with somebody who has HD. If I find out I’m positive, I’m never going to be able to fall in love, get married or have children.”
Yes, I sat a gave these people long hugs and words of encouragement. I share their comments with you only to let you know that you are not alone if you share some of the same feelings or experiences.
Ok, let’s break down “the ugly”:
It’s downright trashy.
It’s trashy because so many people have let themselves go. Down to the point where they have lost their family and their finances are out of control. Many people turn to drugs and alcohol to ease the pain. This negative spiral has turned this into a “closet disease”. I feel that the more we are proactive about establishing our healthcare and support, the less likely we are to be perceived as “trash”.
If I had a nickel for how many times my dad embarrassed me in public? I would be able to start my own HD foundation! By staying on top of medicinal and overall health support, the more we are able to control our outbursts and embarrassing behavior.
It hurts our feelings.
As we share experiences and expose ourselves to what happens in Huntington’s Disease, we develop a better understanding. This in turn will help us cope down the road.
It hurts our family and friends.
I worry about how much I have hurt my husband and son over the years and what they will remember of me once I am gone. Again, I feel that by staying on top of my medicinal and overall health, the more I am able to control my outbursts and hurtful behavior. My meds keep me calm, cool, and collected.
It destroys our career and our professionalism.
I struggle with this one. I consider myself to be a very confident person who prides herself on her professionalism. I am college educated and have years of expertise in my field. My decision to share my situation with my employer has only improved my situation (I hope). I have set myself up for a rewarding career in a position that I can handle for many years. It is hard for me to gage where I will be in the next 5-10 years but I am leaning on the fact that there will soon be an effective treatment for Huntington’s Disease. I will still continue my education and share my expertise with my colleagues for as long as I can. I know that they have a lot of respect for me as I show that I take a tremendous amount of effort towards bettering myself professionally even though I have this mutated gene. It’s not holding me back at all. I will blog soon on how to openly communicate with your employer in a way that will help your career.
People treat us differently.
I haven’t noticed that anyone has treated me differently. Sometimes I wonder but I’ve really tried to focus on what is more important: Do the best I can with what I have. That means that I get cleaned up and dressed every day, and try my best to have a great day. I think that instead of people treating me differently, they instead admire my positive attitude and sense of direction. When you are focused on yourself and what you need, you don’t even worry about what other people think.
Our confidence is affected.
Yes, I feel like my difficulty on “spitting out” the right words and my stutter have affected my confidence. I think that I carry myself differently. I don’t stand up straight anymore. I have learned to not get so mad at myself when I screw up or stumble. I get lost driving all the time. I feel as if I am a good driver. I’m a girl who likes to be independent and explore. I’ve just learned to not only print out directions and have a GPS map handy but I also give myself extra time. If I do get lost or turn down the wrong highway, I don’t get mad anymore. I’ve learned to cope…so now my confidence as a driver is different. Not gone. Just different.
It hinders our ability to do the things we love to do.
I went skiing a few years ago and noticed a huge difference in my balance. I should have known that doing a sport that requires a lot of balance might not be a good idea. Well, I ended up tearing my MCL and ACL that day. No more skiing for me. It’s a sad truth but I’ve learned to try to find new sports to replace the ones I can’t do. I remember that my dad was able to golf for a really long time…as long as we don’t knock anybody in the skull with a club or golf ball…I say we hit the course!
It prevents us from expressing ourselves.
Wow. I don’t really have a good piece of advice. I do worry about this. But I am also seeing tremendous advancement in communication devices and how we are educating the medical community on Huntington’s Disease. I think that if we work with our speech therapists and we are cooperative, we will be able to communicate for a long time. Creative expression through art and music are also areas in which we can explore.
We have to witness our family deteriorate from it. It kills the ones we love who have it…sometimes even our own children.
This part is so hard. I have so many family members that have tested positive and I can barely bring myself to call them on a regular basis. It hurts to see how far they have progressed. But I can tell you that there is so much joy when you hear positive news on their health situation or just hearing the happiness in their voice when you are able to call or visit. It helps you appreciate the little things in life. It helps you appreciate the time you have left.
My wish for those who are at risk to consider the possibilities of living a life “informed” instead of “in the dark.” Huntington’s Disease is so horrible I know but now is the time that we face it HEAD ON. If we are at risk we need to be responsible. If you were given a positive result for an HIV test would you go around having intentional unprotected sex? I hope not. So I ask you, please use your knowledge to stay informed of the possibilities of what can happen when you have Huntington’s Disease. There are so many medical manuals and publications out there on what can happen. I am saying that you do not have to be afraid anymore. Take the facts and then “hang out with us”, your HD peers and we will show you how we cope. We will share with you how you can set your family up for success. There are so many great things that you can accomplish with your life even if you have a higher than normal CAG.
Breathe with me now.
I respect your privacy and your decision to live at risk. But be cool and stay informed.
All my best,