It’s been years since I went to a clinical therapist or psychiatrist so forgive my self-diagnosis of clinical depression. Also, I do not have Huntington’s Disease and will never have the possibility of onset. It’s a double-edged sword of luck. What I can relate to, aside from my family’s personal struggle with this disease, is the mental and emotional side of Huntington's disease. As most of the HD community know, it took quite some time to get past the movement disorder (chorea) aspect of the disease, to understand and acknowledge the mental and emotional disorders it causes. I wanted to examine this and how our current culture of Facebook, Instagram, Snapchat, and Twitter, affect all of us.
Recently, I experimented with my personal Facebook page. I was having an incredibly frustrating day at work and feeling down about absolutely every aspect of my life. I needed an outlet - a release. So, I made a plan to post on my Facebook page. Because I have work acquaintances as friends on my page, I rarely post personal or “heavy” thoughts and ideas.
As I opened my feed, I laughed because the first meme of a page I follow said, “Avoid posting your personal problems on social media. Your personal problems require personal solutions, not social attention.” I wholeheartedly agree with that statement! I have a difficult time understanding people who feel the need to post everything that goes on in their relationship with a partner/spouse or complains about every nuance of their life. I think some things should be private. But on this day, I just wanted to purge everything that was inside my mind.
After thinking about what I wanted to write, (during running errands and my drive home), I sat down and wrote a 397-word post. Here is where the experimental part comes in. I share the meme, along with my emotional purge. If you’re asking what any of this has to do with the topic, here is an excerpt from my post that came after an explanation of why I don’t post personal stuff.
My Post: “I'm not smart enough, not experienced enough, not nice enough. NOT ENOUGH...of anything that seems to satisfy anyone. I feel this ALL the time. Even on "good" days.”
This is a tiny piece of the insecurities I am personally plagued with and have a tough time getting past due to my depression. It’s part of why I was having a horrible day. How does this tie into my topic and what makes it an experiment? I wanted to see what kind of reaction I would receive with such an open and honest post about my struggle.
The experiment was to see if anyone was paying attention. Were people paying attention? I won’t say 100% “no” because the algorithms of Facebook tend to hide things from you if you’re not paying attention. Nonetheless, I will say the answer is "no" regardless. My account said 73 people follow it, and I have 184 friends (I only add people I’ve met). This 397-word post received three likes, one comment using humor without any reference to anything I wrote, and one actual comment where the person put thought into their response. It received one share. Now, why would someone share my very emotional post? They didn’t; they shared the meme. The meme that is impersonal, 17 words with no author, a simple picture to scroll by quickly.
What does it say about a community who cannot take the time to read a statement by someone they identify as a friend, to share in their (Facebook) world? Was that not the point of social media in the first place? Anytime we learn of someone committing suicide, the commentary gets thrown into the same rhythm...“they seemed so happy”...“I would never have expected this to happen”...“there were no signs.” Are you sure there were no signs? Are you positive that you paid close enough attention to them to be able to recognize the trouble they were experiencing? This is the problem with social media today. Facebook, in particular, should change their name to “Picture-book,” or “Useless-video-book,” or my favorite, “Let's-tear-this-person-to-shreds-for-what-they-believe-in-book.”
It’s so easy to get caught up in cute, fluffy pictures and videos, and celebrities, and movies, and gossip, and politics. Don’t get me wrong, I have done precisely that. Who knows what I could have missed? The internet can be an excellent place to learn and connect with other people you may never have had the chance otherwise. But it has its dark alleys. I recently saw a fellow Huntington's community member post how they had to leave support groups because of so much negativity. Read that statement again! A “support group" should not result in more negativity and pain. This is why I back my statement about, “thoughts and prayers.” It’s a great sentiment, it truly is, and many people may need and rely on thoughts and prayers.
But what about sending a private message that says more? What about picking up the phone and calling the person you see struggling to say, “Hey, I’m here for you buddy.” Sometimes, people need an outlet and someone with whom they can talk.
We have an insanely great, and powerful tool in our hands and we do not even realize it. We have the ability to learn about and talk to people from all over the world - different cultures, different ethnic groups, religions, socioeconomic statuses. Our community is no longer restricted to a 10 miles radius in town. What does this mean for our HD/JHD community? How does social media play a role? This great tool we have allows us to communicate and share. It’s how we’ve all come together, and because of "it," you are now reading this article! It also gives us the method to respond - immediately. We should be doing this with positivity and support.
According to an article in the Psychiatry Research Journal, published by The Huntington Study Group, "...completed suicides in HD sufferers were reported at 13%, and a shocking 27.6% of HD sufferers admitted to at least one attempt at suicide. In the neurodegenerative disease space (i.e., Parkinson’s and Alzheimer’s, etc.), only a reported 5.7% complete the action."
These are terrifying statistics. When we think about what we can do, it seems like a daunting hurdle to overcome. We can start by acknowledging our complacency and lack of action. We can recognize the difficulties our fellow friends, family members, classmates, co-workers, and friends on Facebook, are experiencing every day when afflicted with depression and suicidal ideation. Next, we take action. Educate yourself on what depression is. It is more than feeling bad for the day. Understand that it is not as simple as getting an antidepressant from a doctor. Everyone reacts differently to medication; what calms one person can cause panic attacks in another.
Flippant remarks to just “pop a chill-pill” are entirely unnecessary. It may come across to readers that you are uneducated about the disorder/disease, or you just don’t care. Unless you have a medical degree, you shouldn’t be making "medical" suggestions. It’s not always what you can say to a person that is helpful. Listen to understand, not reply. No one has a magic phrase or statement that will make all the bad things go away. Exercise is not the cure; otherwise, skinny or athletic people would be depression-free! Encourage, and never force someone (unless it’s a safety concern), to seek help from peers, medical professionals, support groups, or other avenues of positive coping strategies. Let them know you are there. If you, or someone you know, is going through a rough patch or a bad episode, and need someone to talk to, never be afraid to reach out. If you don’t feel comfortable enough talking to a friend or family, contact the National Suicide Prevention Lifeline at 800-273-8255 (US), or Samaritans at 116 123 (UK).
You are not alone. You are loved.
Sources: Wetzel, H. H., Gehl, C. R., Dellefave, L., Schiffman, J. F., Shannon, K. M., Paulsen, J. S., & Huntington Study Group. (2011). Suicidal ideation in Huntington disease: The role of comorbidity. Psychiatry Research, 188(3), 372–376. http://doi.org/10.1016/j.psychres.2011.05.006