by Kerry J. Heckman
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, (LINK TO (https://globallymealliance.org/education-awareness/find-medical-professional/), 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.
Opinions expressed by contributors are their own.
Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.