Huntington's Disease is the closest thing there is to hell on Earth, at least on an individual level. If you are not familiar with it because it is a fairly rare genetic disease, Google at your own risk. Typing out a very detailed explanation would be very triggering for me.
I found out about a year ago that my family has Huntington's Disease. I have an aunt who has it but I always figured it was Parkinsons or something and was too afraid to ask, being a younger teen when she started becoming very noticeably symptomatic and only seeing her once a year or less. I have not seen her since around 2013 and am afraid to see her again. Her brother, my grandfather, also has it and as of last time I saw him was mildly symptomatic...but that was a year or two ago and he is probably worse off now. My father tested positive as well, putting my brother and I each at a 50/50 risk of also being positive.
I was 19 when I found out. My parents were about a year into the process of separating and my mom was actually the one to tell me because my father, always being one to sugarcoat life's dark truths, opted to never tell us kids. Go figure right? My relationship with both of my parents is not super healthy but for very different reasons. My mom and I are close, and she depends on me a lot for emotional support and I feel like I can't lean on her because she does not have the solutions to my problems (HD-related and otherwise) and lately has been calling me and breaking down into tears due to stresses on her end. My dad and I have a complicated relationship that since the separation and eventual divorce, has been mostly communicating on a need-to-know basis due to events that made me lose faith in him after my parents began fighting. If I choose to ask him for help at all, it is either financial help or asking how to fix something in my apartment, never for emotional support because we have never seen eye-to-eye on an emotional level even when I was a young child. I love both of my parents but feel unable to be completely honest with them whenever I struggle in life, especially in this case.
I worry about my father showing behavioral symptoms, though I may be overanalyzing and paranoid. He has not been able to keep a consistent job since leaving the military five years ago. There have been a couple of occasions where he acted really out of character. I fear he was/is depressed, and part of the issue that contributed to fights between my parents was that he would often sit around and watch TV all day. He forgets important commitments and goes back on his word sometimes. Up until very recently sometimes he would still fight with my mom over text then pretend it never happened. I blamed him and got frustrated with him for being unreliable and confusing but now really worry that he is genuinely forgetful at times.
When my mom broke the news last year, I immediately opted not to get tested to confirm or deny that I have HD and still stand by that decision. That will not change anytime soon unless a.) an affordable cure is developed or b.) I somehow make enough money to take out a life insurance policy first. I have depression/anxiety as well as Aspergers and while I can't say it's ever been quite bad enough to make me thoroughly consider suicide, testing positive could push me over the ledge if I already happen to be going through a difficult few weeks/months. I'd be deeply upset that I'm wasting my best years being miserable and not even being close to accomplishing everything I want to before my time left to live an enjoyable life runs out. My two main hobbies are fine arts of most mediums and video games. These require fine motor skills and I would have to give them up eventually once I could no longer hold a paintbrush or press small buttons quickly...that upsets me so fucking much. I have also found through some light research that insurance companies can discriminate against you if you have HD on record as a pre-existing condition, and while there are laws in place to try and circumvent this type of thing from happening, it is still often a gray area at best. I would not want to create such a heavy financial burden on my surviving family and significant other if I were to become ill and pass at a relatively early age.
Yes, I have an SO. Yes, he knows. We had already been together for four years when I found out and I told him the night of because the guilt would have eaten me alive otherwise. He promises to take care of me but I worry that we might not have as many good days left as we hope. He also jokingly says he'll "give me medical marijuana" and like...that doesn't make me feel any better because I don't enjoy weed at all and find anything that impairs my clearness of mind, whether drug or disease, really terrifying. I 100% support medical marijuana for those who want and have a need for it but thinking of using it myself at a time when my mind will already be slipping makes me want to throw up. Most of all I just never want to be a burden or make him watch me slowly become a shell of myself. He takes such good care of me and does not deserve that horror.
I don't have much of a support system. My family is obviously a no-go, and I have to work hard as it is to hide my emotional distress from my mom when she asks me for help. My SO gets understandably upset at the topic and says "just hurry up and get tested already" and he does not understand my choice not to. I understand he would choose differently if in my shoes, but it feels like it's not even worth bringing up to him because it just makes us both unhappy and never gives any new closure. I went through a rough period of "symptom checking" at one time and it just ended in us both being frustrated even though he still swears he'll be there for me no matter what. We've barely seen each other the past couple of days due to him being unusually busy with work and me being at school working on projects for many hours each day, so as much as I want to seek comfort from him even just by being held it just isn't a good time. I have a lot of acquaintances, friends from college that I'm semi-close with in class but rarely hang out outside of it, and old friends from earlier in life that I've mostly drifted apart from and wouldn't dare burden any of them with this knowledge. I only have one truly close friend these days, and he is such an innocent soul who always comes to me for help with his own problems. I vent to him too occasionally when college life kind of bites or when a family member is giving me grief over something different, but him knowing about the HD would tear him apart and I could just never tell him in good conscience. I know online support groups are a thing but most seem really inactive, and I just can't bring myself to search for groups on Facebook because that would just make it too real too fast. As far as irl support groups, I can't drive due to anxiety/no money for car insurance and have not been able to find a group within an hour of where I live. Seeing someone farther along in the disease could be too upsetting for me anyway and it would take me a while to recover when even hearing the name of the disease can make me lose sleep for a night or two I probably need therapy but my school's counseling program is very limited, I can't afford a real therapist, and the two I have had so far in my adult life didn't really meet my needs so I feel really discouraged from spilling my guts to another one all over again. Huntington's is a worse ordeal than many people have to deal with and as silly as it might sound because I'm sure they hear awful things all the time, I wouldn't want to burden just any therapist with my true feelings on how being at-risk impacts me. I would have to locate a specialized one trained in dealing with genetic illness/terminal illness.
By now you're maybe thinking "well, there's a 50% chance you don't have it, right?" Yes, but holding onto that hope is dangerous for me. There's a saying I keep going back to: "The nice thing about being a pessimist is that you're either right or pleasantly surprised." I used to be such an idealistic person but I've been let down over and over by other things in life (family issues, old friends, college life, having family history of this shitty disease in the first place) and just feel like getting that hope crushed would be the nail in the coffin. And then if I tested negative, there would still be a 50/50 chance that my younger brother has it, which is even worse to think about because he's only 16 and has his whole life ahead of him. He wants to get tested, and that breaks me because he too has been subjected to an unhealthy amount of stress in his teens and I just would not want him to make any rash decisions in the short term, or face the heartbreak and survivor's guilt of watching him wither away in the long term. We are so similar in so many ways and watching him suffer would be watching a part of myself die. I have had enough probability lessons in high school/college that I logically know that the probabilities of us having the disease are independent of each other, but I keep having the obsessive/intrusive thought that if one of us does not have it, the other will have it because that has a greater probability of happening (50%) than both or neither of us having it (25% each). However, just as probable as one having it and the other not is having either the mythical Get Out Of Jail Free Card where magically and improbably neither of us has it, or the most grim and depressing possibility of all where my poor mother has to bury us both. Again I know logically how probability works but can't wrap my mind around it.
Any mention of Huntington's is triggering to me. Occasionally some news of a trial moving forward pops up somewhere and while I have hope and excitement in the moment, I lose sleep that night because I know deep down that it is a race against the clock to find out whether there is any hope for my family. After months of being an untouched white elephant in the room, it has become somewhat of a hot topic of discussion in my family again. My parents have sort of decided to turn over a new leaf and my mom wants to try being friends with my dad again. I want this to be happy news but it just...isn't because every conversation we'e had since has been emotionally draining as she second guesses her feelings and ends up upset by the time we hang up. I believe this was brought on by her learning my dad has been seriously seeing a new partner for several months (something I really didn't know about either) and having an emotional crisis because she still cares about him even though she has no desire to try to reconnect the relationship. She went to his place and they were able to talk civilly for a couple of hours, something that hasn't happened since at least 2014. Their discussions turned to the topic of his health, and while I was not told nor did I ask the specific details, I know Huntington's was involved because she then told me, breaking down into tears, that she would be there for him later in life if the new partner left the picture and/or was unable to care for him. The implication was more than there. She acts like she wants to forgive him for all the bad things that happened but I feel like deep down, it is out of guilt of not staying committed to caring for him and having someone else potentially take up that role.
I am coming to visit home from my college town for a few days very soon. Originally I did not plan to tell my dad that I was going because my mom told me he planned to visit me in August, so I figured he could spend as many days as he wanted with me at that time while I spent my weekend home reconnecting with friends and spending time with my mom, brother, and grandma (mom's mother) without creating a conflict of interest. I only planned to be home from Friday until Monday initially. Then, my mom ended up telling my dad out of a guilt complex during one of their conversations even though she had originally been supportive of how I had chosen to handle the situation. To make up for doing this, she offered to buy me a new plane ticket for a later date so that I could get in enough quality time with everyone. There is a catch to this offer though, and it is eating me alive. My dad was also informed that I may be staying extra days and his response to my mom is that he wants to take me to visit his family for a couple of days since I haven't seen most of them in a while. He has already asked her for my answer at least three times. These family members live about five hours away from my home. Ten hours in a car with my dad, probably filled with awkward silence as we run out of conversation topics early on and his driving (which has always been questionable, decidedly not HD paranoia at play here) scares me shitless. One of the family members we would visit is his father, who has some degree of HD, though I don't know for sure how advanced at this time. I don't think it has gotten really bad yet as he still lives independently so I think I can handle seeing him, but I also feel like my dad will bring it up sometime on the trip before/afterwards and I will have no escape. We have never had a conversation about HD but it would put the ball in his court and possibly prompt him to bring it up if he decides to be open finally and I just...can't. I deal with emotional stresses by isolating myself and having quiet time to listen to music, play a casual video game, and/or wrap up in a blanket until I'm feeling okay enough to interact with someone else. This much-needed processing time will not be available on the trip. I do want to see my grandfather while he still has a fairly okay quality of life and will still know who I am and I will feel really guilty if I don't end up going before it's too late, but the trip will be taxing no matter what happens.
My emotional state has been horrible lately. This will probably be the third consecutive night where I get under four hours of sleep which I know is really bad for my brain but I can't help it. I already have insomnia that comes and goes seemingly at random but the thoughts of Huntington's, which I have managed to suppress for a long time now, are rushing back up to the surface and sending me into panic attacks when my SO is asleep and I'm alone with my thoughts, shaking with tears streaming down my face. I am on my finals week for my summer semester and have a lot of various other unfinished business to take care of before flying home, so the timing for all of the family stuff could not possibly be worse. I have somehow miraculously managed to complete all of my assignments and final projects on time but I know I would not make it through another week of living like this and still maintaining my sanity. As said before I don't really have a support system so I kind of just have to wait and let it pass until the pain eases and I feel mentally okay for at least a little while. Thankfully my mom said she isn't calling me again until tomorrow afternoon once I'm done with class, but I am scared to go home now because I don't think I can catch a break from the emotional stress.
What do I do? How do I make myself hold out and feel okay enough to function for the next several days? How do I handle the trip? I just need a hug and some kind words to make me feel somewhat better.
Submitted July 19, 2018 at 08:54AM by HDisntHighDefinition https://ift.tt/2O0ZZKo
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