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the double edged sword: how online chronic illness communities can help & hurt you

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I have been thinking for quite some time about writing about chronic illness/pain online communities along with their blessings and curses. I have put it off for awhile until I could make sure that I worded things in a way that was compassionate and nonjudgemental. This post is in no way a criticism but rather a conversation starter.

Throughout my own chronic illness journey I have personally come to realize that online communities/ forums / Facebook groups for those who are chronically ill can either be incredibly helpful or really depressing/unhealthy.

Its one of those funny things where something may help early on and then later become something unhealthy.

Chronic illness and chronic pain can be unbelievably isolating and every day I am grateful for the internet’s ability to allow people who are stuck in bed and suffering the ability to still stay connected with others. Thanks to the internet I was able to FINALLY get the answers I needed when I was sick with this “mystery illness” aka Chronic Lyme Disease that no dr seemed able to figure out. Through lengthy searches I finally found the answer on a Lyme forum that it WAS possible for a cortisone injection to lower one’s immune system enough that a dormant Lyme infection could spring to life.

This truly changed my life and allowed me to begin my journey in finding treatment.

Several months after that when I was very early  in to my treatment, a guy in my city that I had met through FB added me to a small private Facebook group called Living Lyme based off a website of the same name (thank you Josh!!). It provided some solid support for me since none of my friends understood what I was going through along with helping me get some answers about questions I had about various antibiotics and how to deal with the grueling herxing that goes along with being in treatment for Lyme.

As my illness passed the one year mark and then the two year mark and onward I joined several other Facebook groups having to do with Lyme, CRPS, low dose naltrexone, herbal protocols , rife machines etc.

Just like Living Lyme, they did offer many helpful suggestions and because they were MUCH larger groups there were many more people with different experiences on various treatment modalities. One thing that began to become more and more apparent though was that because everyone on these forums and groups weren’t getting better, they could be a REALLY depressing place to be.

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It makes sense when you think about it.

People who have regained their health are not no longer going to spend endless hours on these communities.

They feel well and because of that they are leading full lives with work, partners, friends, adventures etc etc etc. Because of this, you rarely hear many “I got better” stories and instead you are continually inundated with how everyone is staying sick. Its awful and depressing. On the one hand it can be comforting to know others are suffering just like you but it is a scary thing to hear people say “I’ve been sick for 20 years” and wonder if this too will be your story.

I think it’s also important to note that if a large part of your online life is spent dealing with all things having to do with your particular illness, you can get stuck in a pattern that all you are is a sick person.

I see MANY people who identify themselves on instagram as a “Lymie” or a “Fibro Warrior” without anything else describing who they are or what they like. I see people’s personal Facebook’s covers, profile images, and anything they post only having to do with Lyme or CRPS or whatever disease they have. On the one hand I think it is helpful and important to teach others about chronic illness and pain. I also think that being comfortable and open enough to say “this is what my life is like right now while Im sick” can be really cathartic but I also think it can be a slippery slope.

I feel like this slippery slope can lead to competition.

I have noticed throughout the years I have been sick that people can honestly get competitive about who is sicker. It’s a really odd concept but definitely not the first time I have come across a person’s bizarre need to “win” over an issue that doesn’t bring you any prizes or recognition. Eating disorder communities, support groups, and even inpatient units can be rife with people competing to be the sickest. Often within a group of anorexics and bulimics this competition is driven by the want to be the thinnest. If you are the thinnest you are the winner, the most beautiful, the best at losing weight, the one who has achieved perfection. While chronic illness communities aren’t exactly the same, I see people who NEED to be recognized as being “the worst”, the most sick, the one who will never recover. I must admit I don’t totally know where this need comes from.

No one’s pain is less important than any other person’s pain.

Certainly those who are “sicker” in terms of being bed-bound, on disability, unable to leave their house deal with stuff that other people who are ill may not. For the first two years of my illnesses I had periods of time where I was able work part-time, able to drive , and was able to leave the house fairly regularly. Now into my third year I  use a wheelchair, often can’t wear shoes or clothes, cannot work, cannot drive, and am very dependent on people.

My pain was just as important a year ago even if it wasn’t completely debilitating in the ways it is n0w.

I’ve had people say “I shouldn’t complain to you, you have it so much worse” and I always say back “Your suffering is just as valid as mine.

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So should you join online communities, forums, and Facebook groups?

I definitely think that if you are new to being diagnosed, resources are important. It’s great to hear what works for others, how to deal with medication side effects, along with feeling less “alone” because here is a large group of people dealing with the same issues as you. I have sent numerous people newly diagnosed with Lyme to the Living Lyme fb group since it was so helpful for me. I think though it isn’t necessary to join 5+ communities. Pick one or two so as your scroll through Facebook you aren’t bombarded with stuff about being sick. If you can, try to describe yourself outside of being sick on online profiles. You can definitely mention it but don’t make it the pinnacle of how to describe yourself.

You are person who is sick but you are not a sick person.

I have thought a lot about how to not lose my identity during this period of my life.

Even in starting this blog I spent many hours hoping I could find a way to talk about what my life is like with chronic pain but not having this blog COMPLETELY revolve around it. I wanted to still write about my life outside my body, the love I have for my husband, the crafts that have caught my eye, and funny puppy videos. I know a few years ago I put something on my Instagram profile about how I was dealing with Lyme and CRPS and after a few days I took it down because I didn’t want that to define me. I try to balance what I post about my illness online with things that have nothing to do with being sick.

Some days it can feel like ALL I am is someone who is constantly dealing with small fiber neuropathy, joint pain, a severe nerve condition that has left me disabled, auto-immune issues, and damage in my brain.

This girl

is also this girl.

You are more than your illness dear reader.

What have been your experiences with online chronic illness communities?

xo,

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3 thoughts on “the double edged sword: how online chronic illness communities can help & hurt you

  1. You are so amazing Genevieve… I think about this subject A LOT. I think it is super important to discuss, and finding the right balance is incredibly hard. My first introduction to the Lyme community on a forum was ‘welcome to hell’. Literally, that is what someone said to me and it scared me to the bones. I often encourage people who are newly diagnosed with any of these illnesses (ME, CFS, Lyme, Fibro, Mold illness, etc) that they should get in touch with people who are doing well… or people who are not immersed in this being their identity. I think there is a huge pattern of fear in the illness communities, and also people spouting off information that has no validity whatsoever (except to them personally). I think other peoples stories start becoming your story.. so choose wisely who’s stories you start to surround yourself with! The worst decision I have ever made was getting caught up in the mold groups.. I got incredibly bad advice that was fear and panic driven and ended up giving away all of my possessions to go live in the desert alone and sick. People who are desperate will start believing anything other people say… that is just one aspect of why this can be a dangerous game!
    The other issues about having your identity becoming this illness is so important to talk about as well. It is an individual process for everyone, and a fine line to walk. I think you personally walk it beautifully. I think having a combination of acceptance and empowerment is key… owning what is going on, while also realizing that you are not your illness, it is just something you are experiencing. I could go on and on.. I think once again you have sparked another blog for me to work on!

  2. You are amazing. I have struggled with letting my ESRD becoming my identity as well .. Hid it for a while but then decided to share it. You really are a beautiful writer n person =)

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