This article was first published on the Global Lyme Alliance blog on April 19th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
Before I was diagnosed with Lyme disease, I'd already been diagnosed with multiple autoimmune disorders. At the time, I turned to the internet to learn about diet protocols and treatment options and found an active autoimmune community. After I was diagnosed with Lyme I went searching for a similar community to help me cope with a new and overwhelming diagnosis. I didn't know how life-changing my being introduced to that community would be. I've met so many knowledgeable and inspirational people since then who've become my mentors and friends during this journey.
That being said, it's not always rainbows and sunshine on social media. There are some definite downsides and moments where a good social media detox is warranted. Here is a list of the pros and cons of social media when coping with Lyme disease or other chronic illnesses.
1. Meeting people who have the same illness.
My non-Lyme friends give me strange looks when I tell them I'm going to coffee with a Lyme friend I met online. Getting together with someone I met on the internet is probably not something I would've done before contracting Lyme, but now it seems completely normal. There is a very special connection between people who are diagnosed with the same illness. I've been fortunate enough to meet in person many of those I first met online and every time I meet someone new we click instantly and talk for hours. Even if you're not comfortable meeting face-to-face, it's comforting to interact with people online who can relate to what you’re going through.
2. Resource sharing.
While we are making progress, treatment for chronic Lyme disease has not yet been mainstream. Some of our doctors are forced to hide that they treat Lyme out of fear of losing their medical licenses. Many Lyme patients get referrals to Lyme Literate Medical Doctors (LLMD) and other Lyme-literate medical professionals through websites, forums, and Facebook support groups.
3. Sounding board for symptoms and treatment.
It has been said that Lyme disease is a do-it-yourself disease. This was true for me until I found the online Lyme community. Lyme disease symptoms can change daily or even hourly, so it's comforting when you learn that someone else has had a similar symptom. It also helps to chat with someone who has had a similar treatment protocol, so you can be at least in part prepared for the side effects. Naturally, our doctors have the final say with regard to treatment, but information sharing among other Lyme patients is invaluable.
No one should have to face a devastating illness alone and there is a real sense of belonging in the online Lyme community. Having this community is like an informal support group. They are there to chat with you on your bad days and for you to talk to them on theirs. The community listens to each other's stories of successful treatment and things that didn’t work out. I'm so proud to be a part of this group.
Many of the social media accounts that I follow are lighthearted and include humor. This is where I find funny chronic illness memes and jokes about the mountain of supplements we all take every day. It can't be all seriousness all the time.
One of the biggest problems with social media when it comes to chronic illness is the inevitable comparisons that happen. It may cause you emotional pain to see other people getting better when you are still struggling, or on the other hand, you may see someone who is critically ill and you fear the same thing will happen to you.
The reality of illness can be very negative, but with social media sometimes you don’t have a choice about whether or not you are exposed to negativity on a certain day. You may be having a good day and then encounter internet negativity (which may not be particularly relevant to your case) and it shifts your entire mood.
Just like in face-to-face relationships there is a social hierarchy online as well. Maybe you follow someone on social media and they don't follow you back, or you notice someone else has more followers than you do. It can feel like a rejection, even if it’s not what the other person intended.
Frequently, Lyme advocacy accounts show the harsh reality of Lyme disease, such as severe disability or loss of life, in order to make others aware of the devastating effects of this illness. Personally, when I hear someone has lost their life to Lyme, my first reaction is sadness for them and empathy for their loved ones; my second response is fear of the same thing happening to me.
You've heard it a million times, don't believe everything you read on the internet, for much of it is misinformed. This is true in all subjects. Also, what worked for someone else won't necessarily work for you. Make sure you look at the sources—are they reputable?— and check with a medical professional before trying anything new.
It's a personal choice for everyone as to how involved they want to be on social media. For some, it's a beneficial resource but others may not be interested in getting involved. Each person must weigh the pros and cons and decide what is right for themselves.
"I believe in one day and someday and this perfect moment called now." - Jacqueline Woodson
Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
Every morning I sit down on my meditation cushion and get into a comfortable position. I do a progressive muscle relaxation starting at the top of my head. I release the muscles in my face, let my eyes rest gently in the sockets, and allow my jaw to fall slightly open. Then, I get to my shoulders and realize they are practically attached to my ears. I let them release down and back, and continue with the relaxation. By the time I’ve reached my toes, my shoulders are right back up hugging my ears.
Like many people, I carry all my tension in my shoulders. This causes pain to radiate down my neck and across my upper back. It tends to happen to people prone to anxiety and worry; those of us who literally carry the world on our shoulders.
So how do you let go?
Here are 7 things you can do to ease the tension:
1. Do shoulder stretches in the morning.
When you hold all your tension in your shoulders, the muscles become constricted and tight. It's important to give them room to breathe. Every morning interlace your fingers behind your back and then do a forward fold. Another easy stretch is to bring one ear down toward your shoulder and hold; you can stop there or gentle guide your head down with your hand. This stretches out the neck and the shoulder. Also, do some quick shoulder rolls, forward and back, to shake out the cobwebs.
2. Let out three big sighs.
During the day, when you notice your shoulders creeping up, hunch them all the way up to your ears, and the let you a loud sigh as you drop them down. Repeat three times. This is also a great instant stress buster.
3. Set up a reminder.
For the technology savvy among us, set up a recurring silent alarm on your fitness tracker to vibrate every few hours to remind you to fix your posture. For those who prefer not to use technology, give yourself a verbal cue, such as every time you’re stopped at a stoplight, adjust your shoulders.
4. Get a massage.
Perpetual shoulder tension could be a nagging muscle issue. If significant pain is involved and doesn't lessen with stretching and ice, massage therapists may be able to work out knots in your shoulders for longer term relief.
5. Get warm.
When we're cold we tend to restrict our shoulders and close in our ourselves to stay warm. When you’re feeling cold, take a hot bath or cozy up under a heated blanket. This will help your shoulder relax and prevent future pain.
6. Watch your posture at your computer and when on your phone.
We're becoming a nation of people constant looking down, either at a phone or a laptop. Angle your devices, so that you are looking square at the screen. Take a break every half hour for the sake of your eyes and spine.
7. Talk it out.
If we hold in emotional tension it will manifest in our body, typically in our shoulders. The tried and true way to get rid of tension is to talk it out. You don't have to go to a therapist (although you may want to consider it) to let out what is bothering you. Talk to your partner, a trusted friend, or a parent. Don't allow things to fester and show up in your body later on.
Shoulder tension is like a nasty passenger riding piggy back all day. It's okay to let them walk; it's not up to you to shoulder the burden.
"Some tension is necessary for the soul to grow, and we can put that tension to good use. We can look for every opportunity to give and receive love, to appreciate nature, to heal our wounds and the wounds of others, to forgive, and to serve." - Joan Borysenko
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.