Social media has changed how we view our relationships with others in many ways. There are so many advantages and pitfalls of social media. Particularly as a transplant patient. When your life isn’t “normal”, the constant sparkly posts inundating our feeds can be disheartening. Even downright depressing. But it’s not without its advantages too. Updates on the latest with family and even reconnecting with friends has never been easier. So how do you navigate it all?
Social Media Pitfalls
Pre-Transplant
I spent a lot of time in the hospital pre-transplant. Like more than half of my transplant wait. Sometimes, my HE would be so bad that I couldn’t even tell you my name, let alone what my old high school buddy was doing over the long weekend. Other times though, I’d have so much time on my hands all I did was hang out on social media.
The problem was, most of the time I felt pretty rotten. My body was tired, I was in pain, I was jaundiced, and I was dying. So I would sit there in my hospital bed going through Facebook seeing picture after picture of people enjoying their lives. Vacations, kiddo birthdays, and family gatherings all littered my feed. Now and then I’d see pictures of my friends hanging out together doing the things we all used to do together.
Every day doctors, nurses, MA’s, and phlebotomists would poke and prod at me. Repeatedly. Every day I was reminded of the ticking time bomb that had become my life.
Meanwhile, right in front of me, everyone in my life was carrying on without me. Listen, I know the world does not revolve around me. We all do. But it makes a person feel pretty dang small to see that the world keeps spinning even when your world has come to a painstaking crawl. Talk about a pitfall!
There were also the friends who came out of the woodwork when they heard I was sick. Suddenly, people I hadn’t heard from in decades were interested in my well-being. This seems like it would be a positive thing, but the truth was, some were in it to make themselves feel better.
We are all familiar with the humblebrag. 2020 has been a big year for it. These are the people who bolster their own ego by sharing the ails of their friend, family member, or even a stranger. The association with someone who is terminally ill (or very sick) is enough for them to garner some sympathy of their own. That then morphs into, “you are such a good person to be there for them.”
Post-Transplant
It finally happens. We get the call and receive our life-saving transplant. Yippee! Life is great! Some disillusioned patients think life will be all unicorns and rainbows after their transplant. Don’t get me wrong, life is great, it just isn’t perfect.
Fatigue, nausea, immunosuppressants, and trauma are just some of the things we may face as transplant recipients. The thing is, everyone will have a different experience.
The pitfall is, social media is there to show us how other transplant recipients are doing. I remember seeing about a liver recipient I knew who received her transplant around the same time as me. Three years later, she won six gold medals (and some silver and bronze too) at the Transplant Games. The woman looked like Michael Phelps with all the medals hanging around her neck. Meanwhile, I had gone through two bouts of rejection and struggled every day to feel well by midday.
I was super happy for her. I promise. At the same time, I couldn’t help but compare myself to her. How is it all these other recipients could do such remarkable things when I struggle to make it to noon most days? That went to “all these” quickly, didn’t it?
Keeping Perspective
When you are sick pre-transplant it is so easy to get wrapped up in woe-is-me. Heck, post-transplant it can come on pretty easy too! When you don’t feel well (or feel rotten) all you can think about is how bad you feel. And a diagnosis of needing a transplant definitely puts you in a self-absorbed space.
In the hospital, IV alarms, vitals checks, and even x-rays or other procedures wake you up all night long. You can forget about sleeping in too! In most cases, vampires (phlebotomists) visit in the early morning hours to draw blood. That way the results are back before doctors start their rounds. You fall back to sleep after that and then it’s time for a shift change and an introduction to your nurse for the day. Again you doze and then it’s time for rounds. You get the picture, right?
You are sick and sleep-deprived. So it’s only natural that your perspective might be a tad skewed. Neither lend themselves to being upbeat and positive or even rational.
It’s also important to remember, most people post only the best of their lives on social media. Nobody jumps online to take a selfie with greasy hair and no makeup. Or to say, “I’ve felt so rotten that I’ve hardly gotten out of bed in three days.”
The Advantages of Social Media
Pre-Transplant
For every pitfall, there is an advantage. Sometimes your friends may be posting pictures of things they are doing without you. Then they also mention how much they miss you in the process. So while we all have a little FOMO, knowing we are not forgotten sure feels nice.
Like I said before, some long lost friends may come out of the woodwork. There may be some out there who actually have genuine concern for you. I reconnected with a friend from my early childhood. It was nice to escape a little while reminiscing with her about playing Wonder Woman. Or ice-skating on the rink my dad made on the concrete in our back yard. I also heard from some friends who I knew through my previous marriage. They were there to cheer me on and pay me a very encouraging visit in the hospital.
Going through the transplant journey has a way of shedding light on the friends you want to have a relationship with. And the ones whose season has passed.
It can also be a great way to find a donor if you are eligible to receive a live-donor transplant. I recently met a patient who was waiting for her transplant. She posted her need for a donor and had over 100 people call in to see if they would be an eligible candidate. 100 people! It’s not the norm to have that many people offer to be a donor, but it might be something someone hears about and wants to do.
Post-Transplant
The transplant community is strong. We all have a shared story to some degree. We understand frequent hospitalization. What it’s like to go through a major surgery. The side-effects of immunosuppressants. And the struggle to find normal in our new life.
The important thing to remind yourself is that we are all different. Some may experience fewer physical or emotional challenges. There are likely many who experience more. We all have a story to tell. As long as we don’t spend our time comparing ourselves, we can find support from one another.
Many online transplant communities include other people too. Transplant caregivers or family, live donors, and deceased donor families. Speaking with donor families is an incredible reminder of the impact of our gift. Hearing about their loved ones and how remarkable they were, never ceases to amaze and humble me.
