Social Media Detox

Looking forward to finding more
zen time with Sammy.

When I was diagnosed with Pulmonary Hypertension I began a journey of wellness. I sought the help of nearly every alternative therapy available to me. Some of the alternative therapies I have tried have been pretty wacky. Others have felt really rewarding because the practitioners helping me supported me so deeply.

In continuation of trying alternative ideas to improve my health, I will be making the transition to  going vegan starting in March. I hope to try it out for a month and see if I notice any changes. I was vegetarian with a limited dairy intake before I was diagnosed, so I am not sure what to expect. I am also going to get a juicer, which I feel pretty excited about! I asked my friends on Facebook to share any tasty vegan recipes they might have with me. This solidified the bigger change that I wanted to make; a social media detox!

Why I Need a Social Media Detox

I started this blog a few months after I was diagnosed. A lot of people with PH reached out to me when I first started the blog and told me that it took them years to get involved in the PH community. I don't think I jumped into creating the blog too soon, but I wasn't prepared for all of what would come with it.

By nature, I am ambivert. I enjoy being social, but on a small-scale with my fellow quiet friends. I also enjoy my alone time and my privacy. I have made some really great friends through social media who I cherish very much. However, it can be a little overwhelming for me to deal with the attention the blog has brought to my personal life. I get daily Facebook adds (often from people that I do not know, and have never interacted with.) I get messages from people that I do not know. "Weird" guys who have some kind of fetish for disabled ladies have also tried to add me to contact me. Cringe. Barf. No thanks. Delete. BLOCK.

My goal of with this blog was to create a sort of "safe space" for people with PH. I realized that it was so sorely needed. I am so grateful for all of the amazing people that I have connected with through this endeavor. I could not have created this without the help of other people, and their willingness to share and discuss aspects of their life. I have also written personal posts and have publicly shared very difficult topics. I eventually rewrote and shared some of these articles on other websites, and was confused by some of the comments I received from strangers. Which leads me to the issues that I have now, and why I so sorely need a social media detox (among with other things!)

I wouldn't say that I am in the public eye, by any means. However, I think there is the assumption that people have the right to be unfiltered with me because I have put myself out there. Perhaps this is a side effect of social media, and it is unavoidable on some levels. I think people forget that I too, am fragile and need support. I am human. I am going through something difficult and challenging on so many levels.

When I first started this project nearly two years ago I was contacted by several PH organization. They did not offer me support even though I was newly diagnosed. Instead, they asked me for help on projects. This blog has given me a lot of great opportunities, but I also think it gives people the perception that I must have everything all figured out. People assume that I am immune to all the emotional and physical complications of PH, when that is simply not the case.

I received a lot of unwarranted advice from both strangers and friends on social media. The “advice” I have received has ranged from birth control (which is sadly, what most took away from xojane article) and my diet to oxygen and my spiritually/religion (or lack there of.) Other people (who do not suffer from a life-threatening illness) have tried to tell me what will “fix me.” I find a lot of this “advice” to be very privileged.

For example, a lot of people not in my situation have told me that they would go on "eat, pray, love" mission if they had PH. Having PH can make it difficult to travel for a variety of reasons that differs from patient to patient. Another issue is that I can't have salt because it can cause heart failure. That is two out of the three components of their asinine idea. Others have made comments on me becoming a parent/adopting saying whether I am too sick to do it, or that I should just do it anyways! I realize that I did write about this topic openly, but I didn't expect people to feel comfortable enough to say whether I was healthy enough or too sick to do something. Some of the comments were very cruel, but it is fine. I knew that this was a high possibility when I began writing on my blog and freelance writing else where.  The issue is that these comments and “advice” have slowly made its way over to my personal social media accounts, the place where I wanted to maintain a sense of normalcy. I have slowly lost my “safe place.”

It is fine if people want to comment on my posts here or my freelance work. I always appreciate the fact that someone took the time to write a comment, regardless of what it is. I want to emphasize that I do want people who read my blog to feel as if they have a friend in me, and that they have my support. I always feel very honored when people take the time to send me an e-mail about an article or blog entry that I wrote. My business e-mail address is always there for anyone who wants to reach out to me about anything, whether it pertains to a freelance writing, or someone has just been diagnosed and is looking for support. I truly, truly, truly want to offer my support to anyone who reaches out to me. I know how lonely and isolating this disease can be, and I have made some of the best friendships with people that I have not met through this blog.

My birthday just passed and I was surprised by how many people mentioned the fact that I was sick in the same breath as wishing me a Happy Birthday. I am sure these people meant well. I do appreciate the birthday wishes that I received, but I think sometimes people need to take a moment before they hit “send.” Did I want to think about having PH on my birthday? No- but sadly there hasn’t been a day yet where it hasn’t consumed me. Do I want people to only view me as someone with PH? No. I am so much more beyond all of this, and have a life and interests beyond it. I happen to have PH, but it isn’t a word that describes me.

So, this brings me to my much-needed social media detox! In March I will try juicing and making the process of going vegan for a month. I also plan to deactivate Facebook for the month and limit my computer and cell phone use each day. I will still be on Instagram (because there are pictures of cute dogs there...) My hope is that I will have more time to meditate (and to become better at it) each day. I hope having more spare time that is free of distraction will also encourage me to read, write and draw more.

I really just want to live a better life. I feel so disconnected from people sometimes because of technology. How many times do we check our phones during dinner or a conversation? I know I have been guilty of doing this. While social media can be really create for friendships, I think it can also give a false sense of what is important in life. I just need to balance having a life beyond the blog, and hope that my desire to have a personal/private life in addition to the blog can be appreciated.

xo Serena

*Note: The PHight or Flight Project will continue during the month of March. Please be sure to follow me on Twitter for the latest updates, or subscribe to my posts by entering your e-mail in the tool located in the menu to the right. You can also view updates directly on your phone by downloading the phaware app. Click "more" and scroll down to find my blog.